Post Fifteen. Employed To Unemployed.

This week has seen a huge change in my life, it’s been brewing since early December but on Wednesday 7th June it became official. It was my last day of employment with Cyrenians, an Edinburgh based charity.

For nearly 50 years, Cyrenians has served those on the edge, working with the homeless and vulnerable to transform their lives by beginning with their story, helping them believe that they can change their lives, and walking with them as they lead their own transformation.

Our Vision is an inclusive society in which we all have the opportunities to live valued and fulfilled lives. We work to make that vision a reality by our Mission to support people excluded from family, home, work or community on their life journey.

Our way of work is built on our four core values:

Compassion: We believe that everyone should have the chance to change, no matter how long that might take.
Respect: We believe in tolerance, acceptance, valuing diversity and treating each other as equals.
Integrity: We are committed to the highest quality of work, grounded in honesty, generosity, sincerity and professionalism.
Innovation: We are willing to take risks, challenge convention and be very creative in our search for new ways of working, in particular by taking account of the environmental impact of our decisions.

I’ve worked for Cyrenians since July 2012 in the Community and Food branch of the charity. We ran the FareShare Franchise for Central and South East Scotland. FareShare is a national UK charity who redistribute surplus food from producers and suppliers to not-for-profit organisations that work with vulnerable people, such as homeless hostels, soup kitchens, community groups and childrens breakfast clubs. We, with our army of volunteers, got the food to those who need it the most, while helping to avoid excessive food waste.

It was a privilege to work for Cyrenians, yes it could be stressful, yes it could be physically and emotionally challenging (I have cried in the walk-in freezer on more than one occasion), but taking a job there was one of the best decisions I’ve ever made. I have met some wonderful people. The volunteers I worked with, even though I haven’t seen them for over two years, they still inspire me. I mean, sometimes I struggled with the 7am starts. I’d walk to work in the dark on a rainy winter’s morning to arrive at the depot (that was usually colder inside than outside) to be met by smiling volunteers, ready to start their busy shift of putting the food orders together. All the volunteers, in all of their roles, with their dedication, willingness and hard work are really what made this job for me. Of course distributing seven tonnes of food per week and feeding thousands of people was good too, as was driving the forklift!

My forklift qualification wasn’t the only slightly bizarre but memorable aspect of this job. I once spent an afternoon stacking over 3000 haggis (haggi?) in our freezer. The tens of thousands of Snickers bars that we received because they were put in the wrong wrappers. I’ve seen ‘behind the scenes’ of many supermarkets and their distribution warehouses, yes I find this fascinating, really! I’ve got an Intermediate Food Hygiene (with credit!) qualification from The Royal Environmental Health Institute of Scotland that I wonder if I’ll ever have a use for again. I was once forced on stage by the Scottish singer/songwriter Dougie MacLean to give a speech about Cyrenians in front of a couple of hundred people. I’ve helped a poor delivery driver clean the back of his van when a yoghurt delivery went wrong and two pallets of yoghurts basically exploded in his van. Then there was the simple pleasure of working away at the computer to have a volunteer appear with a cup of tea that they’d made for me, I swear many of them could read my mind. There were a lot of sombre moments too of course, and I have many memories of a more saddening nature. But I feel pleased, and fortunate, that I was in a position to help and support people, when help and support was needed. I’m incredibly proud of the work that Cyrenians do, and am so proud to have worked there for the time that I did.

I have been off work sick since December 2014, and I have been in the fortunate situation in which my employer was keeping my job for me. This couldn’t last forever though, and as devastated as I was when I was told in December that I may soon have my contract terminated on the grounds of ill-health, I understand why. I admit to having had some less than kind thoughts about Cyrenians in the last few months, I suppose it’s been part of my process, in which I have come to terms with my unemployment. I haven’t left Cyrenians in ‘disgrace’ and it has nothing to do with my performance or ability to do my job, but it took me a while to accept this particular ‘life event’.

Despite the stressy bits, I really loved my job. It took me until I was thirty two years old but I found what I felt was the perfect vocation for me, and I had honestly envisioned myself quite possibly working for Cyrenians for the rest of my life. Not necessarily in the same service, but I admire the Cyrenains values, I share those values and I’ve never had a better employer, or felt more proud about the work that I was doing. My future is pretty uncertain now (oh dear, the song ‘Beauty School Drop Out’ from Grease is now going round my head! “Your future’s so unclear now, what’s left of your career now…”). Sorry, anyway, I don’t know if I will ever be well enough to work again. I hope I will be, but I have no idea what that work will be. I could go back to Cyrenians, I know I’ll be welcome should a suitable job arise, or maybe I’m destined (I don’t believe in destiny or fate, but I can’t think of a better word) to continue my work to raise awareness and campaign for people with ME.

It wasn’t until I got ‘the news’ in December that I really realised how much of my self-worth is tied up in my employment. My initial feelings when I heard the news was that I had lost my value, that I had been stripped of my identity and my feelings of self-worth went down the toilet. I had already not been working for over two years. I was technically employed but on long term sick leave, now I’m properly unemployed, my day-to-day life hasn’t changed. So why all these feelings?! Maybe it’s just reaffirmed the things that I miss the most, the most precious things that I have lost due to my illness; my ability to work, my ability to earn my own living, my ability to live independently, my ability to contribute and my freedom to live my life in the way I choose. Something else that’s been nagging away at me is that unemployment in general, is not looked kindly upon by society. I’ve heard friends, politicians and acquaintances in the past deride unemployed people, I’ve heard them make unfair generalised comments about benefits claimants. Now that I’m one of them, what do those people think about me?

Anyway, I can see this post steering away from the point and developing into a rant about the Tories, so I’ll end this here. (FYI That Tory rant will appear in a future post about my experience so far as a benefits claimant.)

I’m so pleased that I had the opportunity to work for Cyrenians and I’m forever grateful to my three previous colleagues, who were on my interview panel and who gave me a chance. I worked with some amazing people, not just in my service but all over the organisation, I made lovely friends and I learned so so much. I’ll miss the freezing cold depot, I already miss it, but I know they’ll continue doing the fantastic work that they do, for as long as they need to do it.

PS If you like the sound of Cyrenians and the work they do then I’d recommend you follow the CEO, Ewan Aitken’s blog. You may also like to browse the Cyrenians and FareShare websites.

Post Fourteen. ME And Me, By Amelia.

Welcome to my first guest post, written by my very talented niece Amelia, who is twelve years old.

It began a school assignment, ‘A primary seven personal project about a subject of her choice of interest to her’. To my delight and surprise, Amelia chose to do this assignment on the subject of Myalgic Encephalomyelitis (ME), and how my illness affects her. It’s an impressive piece of work. She did her own research, she chose some really descriptive images, and she makes some very interesting and insightful observations. I admit that when I read her first draft, it had me in tears, in a good way! I am just moved beyond belief that Amelia chose to use this as an opportunity to raise awareness of ME, I’m so proud of her, and I’m a little bit in awe of her to be honest. Again this has made me feel so incredibly lucky to have such supportive people in my life.

Everything else you’ll read below, is by Amelia.

ME and Me, by Amelia.

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” Ron Davis – Geneticist

This quote was made by a Californian geneticist whose son suffers from Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, commonly known as ME is a chronic illness which has affected my family since early 2015 when my Auntie Phoebe was first diagnosed.

In this report I am going to first tell what ME is, how it is caused and some of the symptoms of ME. I will write about the very common misconceptions that many people have regarding ME. I will write about how it affects my Auntie Phoebe and how it affects me and my family. I will also write about what is currently being done to help sufferers and how we can help people who are affected by this horrible illness.

Myalgic Encephalomyelitis

What is it?

Myalgic Encephalomyelitis, also know as ME, is a terrible illness that affects hundreds of thousands of people across the UK and millions worldwide.

It is a neurological illness, which means that there is something physically wrong with the nervous system. It is also a chronic illness, which means it is life long and there is currently no cure. It affects many body systems like the nervous system, which is the network of nerve cells that communicates with the brain, and immune system, which fights germs and diseases.

Many ME sufferers have severe, persistent fatigue. Fatigue is another way of describing extreme tiredness.

Not everyone who has ME will have the same symptoms so it is impossible to compare them to one another. Two people might get ME at the same time from the same probable cause but one could recover in a few years and the other could have it for the rest of their life. That’s one of the reasons why it’s a very hard illness to understand.

FullSizeRender (1)Symptoms of ME

· Post-exertional malaise. This is the extreme exhaustion felt after any physical or mental activity, such as a phone conversation, filling out a form, taking out the bins or making tea, or the worsening of all symptoms.

· Gastro-intestinal problems. These are problems with the stomach, gut and intestines.

· Cognitive dysfunction. This is also known as brain fog. When you have brain fog, you are unable to remember, reason, concentrate and think.

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

· Depression, as ME limits human interaction so much so it is easy to become depressed.

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These are only a few of the many symptoms. Every ME sufferer experiences different symptoms at different times.

Causes

The exact causes of ME are unknown, but there are many theories of what they could be. Here are some of them.

· A viral or bacterial infection that damages your immune system

· Your genes

· A hormonal imbalance

· Immune system problems

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What can be done?

The NHS have created a treatment plan for ME sufferers that is meant to relieve their symptoms. Many ME specialists disagree strongly with these methods as they have been proven to cause harm to patients. The plan consists of daily exercise, like swimming and walking. ME sufferers are sometimes unable to stand up, how could exercise help them?

It would tire them out so quickly, they would have to interact with others and the payback the next day would be horrific. These plans could worsen patients significantly.

There is no cure for ME. Invest in ME, which is a research charity trying to find a cure for ME, is hopeful that one day there will be a cure. Current treatment can only treat the symptoms, not cure the illness.

FullSizeRender (4)Common Misconceptions of ME

ME is a very misunderstood illness that people don’t take seriously. It is commonly called “yuppie flu”, which is offensive in so many ways to ME sufferers and their families. In the 1980s, it was dismissed as yuppie flu or shirker syndrome. People said that if they went out for some fresh air or even go see a therapist, that they would feel better. Some people said they were faking it or some put it off as being a bit tired. Due to modern research, these horrible remarks and rumours have been proved wrong but there are many people out there whose belief of ME needs to be put straight. The more people that are told the truth about ME, the better.

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My Experience of ME

My Auntie Phoebe was diagnosed with ME in early 2015.

Before she was diagnosed, she was a shift coordinator working at a food depot run by a homelessness charity. She was in charge of recruiting, training and supervising volunteer workers and helped manage the depot. She organised pick ups and deliveries of food to many charities working with homeless and vulnerable people in Edinburgh. She loved being in such an important position and giving people a chance to get back on to their feet. She also loved driving a forklift truck!

A few months before she become ill, in May 2014, Phoebe was offered her dream job, working at the Penguin Post Office in Port Lockroy, Antarctica. In summer 2014, she started to feel ill and went to several doctors and consultants before being officially diagnosed with ME. Heartbroken, Phoebe had to withdraw from this amazing opportunity. She has been practically house bound since then. Just over a year ago, she had to move from Edinburgh to Peebles to be nearer my Grannie. She had to stop working in 2014 and now lives on (very few) benefits and her savings.

One of the things that Auntie Phoebe does to help her come to terms with her illness is to write a blog called puffins&penguins&me about her experience of ME. It is beautifully written and very informative.

She also encourages her friends and family to hold fundraising events. Last March, the day before Mother’s Day, my mum and I held a fundraiser for Invest in ME. We organised a mother and daughter afternoon tea in the Scout Hut in Currie. We advertised on Facebook and sold etickets. We made many different kinds of cake and sandwiches, served tea and coffee, borrowed massage tables and set up a nail bar so mothers could get pampered by their daughters. We also asked local businesses for raffle prizes and sold tickets. We made £651 and we gave half to Invest in ME and the other half to my gymnastics club.

It was my Grannie’s birthday a few weeks ago, which happened to be on National ME day on 12th May. She threw a party wanting only donations for Invest in ME. She made over £1000!

One of the most difficult things about ME is that sufferers do not look ill. Phoebe went to Grannie’s party and looked beautiful. She managed to stay out for nearly 3 hours, which is the most socialising she has done in years. What people don’t see is the suffering she had the next day.

This is an excerpt from her blog.

“Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush.”

Before she got ME, I would see my auntie all the time, have days out, sleepovers and holidays together. Now Phoebe is so affected by this horrific illness that I rarely see her. Often we arrange to meet her but then she is so ill that we can’t even pop in to say hello or give her a coffee. I love her so much and I would see her everyday if I could.

A Typical Day

These are Phoebe’s words but I have changed them a bit.

  • 10pm – 1am – Falling asleep – this never happens easily and often takes hours.
  • 1am – 11am – Broken sleep, often with hours of wakefulness. A symptom of ME is insomnia.
  • 11am – 2pm – I try to wake up and get up. This can often take hours. When I wake I feel paralysed. I wash my face and brush my teeth and check emails. I can no longer shower every morning.
  • 2pm – I go upstairs and make breakfast. I am completely vegan and eat nothing processed.
  • For the next few hours – I lie on the sofa, sometimes watch tv. I can’t read a book as I can’t focus for long enough. I have to close my eyes for 5 minutes every half hour to regain some energy but I never nap. I slowly prepare dinner, having a rest every few minutes. A 20 minute meal takes over 3 hours to prepare. Sometimes my mum comes in to visit me, she does my dishes and takes out the bins. I listen to music. I suffer from pain every day. I also have sensory overload so I wear noise cancelling headphones and only take them off when I have a visitor. I leave the house every Wednesday for an appointment with my counsellor and rarely leave the house apart from this.
  • Late evening – I go to bed and it all starts all over again.

What you can do to help

I am not going to tell you to become a neurological scientist to help ME sufferers. There is one very simple thing that you can do to help. TELL PEOPLE! All you need to do is tell others about this illness. It doesn’t matter who it is, your mum, dad, grannie, grandpa, uncles, cousins, friends, as long as you are telling someone. Tell them to tell others too! I know it sounds like a movie plot but seriously, just spreading the word can help. So, please help brighten the future of ME and tell everyone you know about this horrible illness.

On Friday 12th May, there was a demonstration outside the Scottish Parliament, trying to persuade SMPs to spend more time understanding this illness. This movement is called #millionsmissing meaning that millions of people are missing out on their lives. It was symbolised outside Parliament by pairs of shoes that never go outside. Here are Auntie Phoebe’s work boots on her forklift truck.

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I know it won’t happen overnight but I really hope that one day, science will have found a cure for ME.

Glossary

Myalgic Encephalomyelitis – A medical condition characterised by long-term fatigue, pain and other symptoms that limit a persons ability to carry out ordinary activities.

Neurological – relating to the anatomy, functions and disorders of the nerves and nervous system.

Post-exertional malaise – The exhaustion felt after any activity and worsening of all symptoms.

Cognitive disfunction – also known as brain fog which means you can’t think clearly.

#millionsmissing – the movement of ME sufferers and supporters to make ME a more understood illness.

Post Thirteen. My Mum’s Birthday/Fundraising Party for Invest In ME.

My mum shares her birthday with ME Awareness Day and last night she held a birthday/fundraising party for Invest In ME. Instead of presents and/or cards she asked for only donations. She still has a few promises of donations to come, but it’s looking like she will have raised over £1000 in total! Incredible!

I attended the party and I don’t know how I did it but I managed to stay for three hours and had multiple conversations with my mum’s friends, mainly answering questions about how ME affects me. It was a lovely evening and a welcome distraction from the terrible week I’ve had.

I knew it was more than I could safely manage. Throughout the evening I knew I should escape to a quiet room to lie down for a rest, but I really didn’t want to drag myself away from the party. I miss out on so much already, I couldn’t bear to miss out on the fun going on around me. So I unadvisedly pushed through.

Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush. I remember feeling like this in the past, but it was easier to cope with when it was self-inflicted through an excess of fun and alcohol. All it took on this occasion was three hours of pleasant conversation the evening before.

This was the first party I’ve attended since 2014, and the first situation I’ve put myself into that I knew would involve constant interaction and conversation with people. I knew it was a risk. This is the worst payback I’ve experienced for quite a while. It’s made me realise that up until last night, I’ve actually been fairly good at pacing and managing my activity to avoid PEM (post exertional malaise). I hope in one evening I haven’t undone any progress I may have made so far. When this bout of payback is over will I go back to how I was doing pre-party? Or is this the beginning of a new phase in my illness? I have no idea. But this is something I have to think about with every single decision I make. I have to weigh up the pros and cons of everything I do. Will the boost to my mental and emotional health outweigh the potential negative and possible long lasting impact on my physical health? I don’t know. It’s impossible to know. I go into everything I do blindly.

While I’m punishing myself for my stupidity and desire to be ‘normal’ for an evening, I can at least take comfort in the fact that the charity, Invest In ME, who campaign for biomedical research into ME, will soon have over £1000 to invest into ME research. This is on top of the money raised by my friends and family in the past few weeks. I have great people in my life who are going out of their way to raise awareness of ME and who are raising money for much needed research.

I’m also quite sure that after this bout of payback fades, that I’ll only have fond memories of a lovely evening. My mum still lives in the house I grew up in, it’s a wonderful and beautiful Victorian house full of lovely memories. It was really lovely last night to see the house and garden so alive with people, chatter and music. The children played on the garden wall and surrounding trees, my niece waited on the guests in style with her bow-tie and flowery Dr Martens. The food was excellent, the wine was flowing (not in my direction obviously) and the live music was a lovely touch. And above all I’m so touched by the incredible generosity of my mum’s friends who donated their time and money, and my wonderful mum, who donated her birthday to help find a cure for ME.

Post Twelve. How You Can Help.

People often ask me what they can do to help me, which is lovely. Within the texts and the emails I receive from my friends I often see ‘I wish I could do something to help you’, or a variation of the same sentiment. Generally speaking, I don’t expect help, no one has any duty nor obligation to help me or make my life easier. But, I have to admit to the fact that I can no longer do everything myself, I do need help. I need to accept help, and what is harder, I need to ask for help.

I’ve known this for a while, but what really brought it home was my recent experience while in week two of my tonsillectomy convalescence. There were a few days when my mum was very ill with a cold, she had a temperature and really had to stay at home and rest. She wasn’t able to do the things she normally does for me, she was just too unwell. For four days I was alone, with ME, post-surgery and with a cold too. I was running out of things that I needed but I couldn’t go to the shops, I can’t even do that on a normal ME day. I felt incredibly lonely, and the isolation made me feel very low in mood. I couldn’t bring myself to reach out and ask anyone to pop by for a visit or to go to the shops for me. I need to be able to ask for help. I really don’t know if my inability, apprehension, discomfort and/or fear of doing so is a normal chronic illness thing, or a Phoebe specific thing. Anyone?

Now, I had already planned a blog post about how my friends and family can help me in terms of raising awareness and fundraising etc, and I’ve decided to expand on that. So this post is to let you know what you can do to help me, should you wish to. There is no pressure and there are no expectations on my part. I’m being very honest and upfront about the variety of ways in which people can help me. But I know people are busy, people have families, and jobs, and worries and stresses of their own, and my needs shouldn’t come before your own. I will however be asking something of you, it’s a big deal, and it isn’t easy for me. But I have to, it’s probably the next step before I one day, maybe, need to hire a carer.

The ways in which you can help me basically boil down to the following…practical support, emotional support, raising awareness/campaigning, and fundraising.

Practical Support

Most of my practical support comes from my mum. She empties my bins, she washes my dishes, she changes my bedding, at the moment she does my cleaning because I’m currently without a paid cleaner, she does my shopping, she washes my hair when I’m too weak and she drives me to appointments. When my mum has been on holiday I have a friend who has stepped in and done some of these things for me, but she really had to push me to accept that she wanted to do these things. Obviously to be able to offer me this kind of practical support you need to live locally, I have friends and family far and wide who I know would help me with the practical stuff if only they lived closer.

My recent experience of suddenly being without my mum for a few days made me realise that I need to put something into place, should this happen again. What I need, I think, is a pool of people who would be happy to be on stand-by for situations like these. Someone who I can text asking if they could fill my prescription, or go to the shops, or put my wheelie bin out etc. But for me to be able to ask this of someone, I need to know, explicitly, that they are happy to do so. A vague offer of ‘let me know if I can do anything for you’, will never result in me asking you to do something for me. Maybe that’s a bit twisted, maybe it’s really weird of me, but that’s how I need it to be. The ‘let me know if I can do anything to help’ offers are kind, but I just don’t know, under such vague terms, what would be too much for me to ask. I think that’s the crux of the matter.

So, if anyone, who lives locally, who I know personally, would be happy to receive a text from me, should I need assistance with something, please let me know. It’s very likely you will at some point receive baked goods in return.

Emotional Support

While my geographically far away friends and family can’t help with my chores they can, and they do, keep my spirits up by keeping in touch via email. I have a few friends and family with whom I keep in regular contact using email, Facebook messenger or text. They check in regularly, they send recipes, articles or music that they think will interest me, and they simply keep in touch, just like they did before I was ill, or more so. I think many understand just how much more I need that, now that I’m so isolated and withdrawn from ‘real life’. Importantly they also understand that there might be a delay of a few days, or weeks, before I can reply, there’s no pressure for me to push myself to reply when I don’t have the energy or strength. I also have a few lovely friends who frequently send me incredibly thoughtful gifts, cards and letters through the post. This is seriously going above and beyond, but it’s always extremely appreciated. It’s a cliché what people say, that during the hard times you learn who your friends are, but it’s true. It really can bring out the best in people, and there’s the opposite, but let’s not dwell on that. At the moment I want to celebrate those who have helped me through this, because I couldn’t do it without them.

What also keeps me going is receiving visitors, this is what I live for. I like catching up with friends in person and chatting over coffee and cake as much as I ever did. Unfortunately with my circumstances being what they are, I have to limit how frequently I can see people and I have to put a time limit on each visit. Scheduling visits can be tricky, and despite my empty life, my calendar fills up remarkably quickly. To help you understand…to avoid PEM (post exertional malaise) I need to rest between activities, so I make it a rule not to schedule activities on consecutive days. Activities can include GP appointments, hospital appointments, Sainsbury’s deliveries, a friend visiting, going for a drive with my mum or counselling appointments etc. So lets say my friend who I maybe only see once or twice a year wants to visit but she can only do weekdays. Well, I have counselling every Wednesday so Wednesday’s are out, I need my rest day before and after counselling so that means Tuesday’s and Thursday’s are out. So we’re left with Monday’s and Friday’s. But if I already have plans for that Saturday then Friday is out, or if I have strayed from my plan and have a GP apt on the Tuesday (because it’s all she had available) then Monday is definitely out. I also try to stick to only one additional activity per week, on top of counselling. More than two activities per week is really pushing it for me, and from past experience I’ve learned it is extremely unwise, no matter how much I want to. Do you see why, despite my empty life, it can become tricky to schedule in a visit? It’s not because I’m living a full and exciting life, it’s because I have to plan everything, meticulously, around my illness and what is best for my health. I am learning, for the first time, how to put myself first, and it doesn’t come naturally to me. I understand that my lack availability might be off putting for you, I might come across as flighty, or like I don’t really want to see you, or like I’m making excuses, but I promise you, I want to see you. We both need to accept that it just might be a few weeks or months away, and that’s ok, it gives me something to look forward to, and I like that.

Raising Awareness and Campaigning

Raising awareness is incredibly important, because no one is going to fund research for an illness they are not aware of. Some people may think they are aware of ME, but the amount of misinformation out there is staggering.

What I want, is for ME to have the same impact as any other serious and life-altering illness/disease/condition. I hate that the world of chronic/serious illness is seemingly divided into cancer and not-cancer, but people ‘get’ cancer, they understand the seriousness of cancer. When you hear that someone has been diagnosed with cancer, you immediately feel the full impact of the horror of that disease. When you hear that someone has been diagnosed with ME, you possibly think they are just a bit tired, that a bit of rest will cure them, that it’s all in their head, that they just need to exercise, that they need to change their diet, that they’re lazy, or you might make a joke about yuppie flu. I’ve heard all of these. What I want is for people to understand the horror of ME. I want people, when hearing that someone they know has been diagnosed with ME, to ‘get’ it. I don’t expect non-sufferers to understand the intricacies of having ME, just like I don’t know the intricacies of having cancer, I’ve never experienced it, but I get the gist. I know that it destroys lives, it can tear families apart and it desperately needs a cure. So does ME; and people, our government, our health care workers, they all need to know that. Understanding would go such a long way in achieving the health equality that we, the 17 million people with ME, deserve.

This is probably the easiest thing I could ask of anyone. If you have a Facebook or Twitter account you can easily spread awareness by sharing any ME articles, or blogs I post. You can sign and share the petitions I share. You can follow the ME pages that I follow. Just by liking what I post on Facebook it will show up on your friends newsfeeds. You can also share my own blog. There’s bound to be at least one of your Facebook friends who thinks that ME is nothing more than ‘being a bit tired’. If sharing articles or my blog posts on your newsfeed can put that one person right, then that’s a job well done, the next time they hear a ‘yuppie flu’ joke they can put that person right. This is how you spread awareness, people power! Spreading awareness is one of the biggest and most meaningful things you can do for me, besides you know, finding a cure.

ME Awareness Month

You may or may not be aware but May is ME Awareness month. I can’t mention everything that is happening this month, this post is already pretty long, but I want to bring the #MillionsMissing movement to your attention.

#MillionsMissing is a movement to raise awareness for ME, which as you know is an underfunded and ignored illness. On May 12th 2017, ME Awareness Day, thirteen cities in nine countries will demand change. We ask for increased government funding for research, clinical trials, medical education and public awareness. I’m delighted to tell you that there will be a protest event in Edinburgh this year. This will be on Friday 12th May 2017 from 12:00 PM to 14:00 PM outside the Scottish Parliament Building. People with ME, their friends, families and carers will be there, and maybe a MSP or two. But there will also be lots of empty pairs of shoes with tags attached, these will be representing the #MillionsMissing. The millions of people with ME who are missing from their jobs, their families, their communities, their lives. Please join in if you can, and tell people, or if you pass the protest and can’t stop, take a quick photo and share on social media, with the #MillionsMissing hashtag. Click on the #MillionsMissing link above and scroll down to the blue section to find your closest protest.

Unrest

I’d also like you to look out for the documentary film, Unrest. Director Jennifer Brea was a journalist and academic studying for a PhD at Harvard. Months before her wedding, she became progressively ill, losing the ability to even sit in a wheelchair. When told by her doctor it was “all in her head,” her response was to start filming from her bed, gradually deploying crews globally to document the world inhabited by millions of patients that medicine forgot. I’m in communication with the Edinburgh Filmhouse to have the film screened there on it’s general release in the autumn, but it will be screened at various film festivals before then. You can also watch Jennifer Brea’s poignant TED talk ‘What happens when you have a disease doctors can’t diagnose’, here.

Please visit my About page to see which additional charities/movements I’d encourage you to follow on social media.

Fundraising

ME is a vastly underfunded illness, especially when based on the impact to the life of a person with ME, when compared to other illness. I couldn’t find relevant information for the UK, but, here is an article estimating the disease burden of ME in the United States and its relation to research funding. It’s pretty grim reading.

Donating money is an easy concept, for those with the financial ability to do so. Fairly recently, I think it was after I wrote Post Nine, a few people got in touch and asked me what my preferred ME charities were, in terms of donating money. If you feel that you would like to make a donation, these are my preferences…

Invest In ME

Invest in ME was formed in 2005 by patients and carers of children with ME. It is run by a small team of dedicated volunteers, the charity has no paid staff and keeps all costs to a minimum. They campaign and fundraise for biomedical research into ME. They really do so much, it would be a whole blog post to do them justice, please check out their website for more information. Invest In ME are my first choice, in terms of monetary donations.

Edinburgh ME Self-Help Group

Founded over 20 years ago, Edinburgh M.E. Self-Help Group (edmesh) is a support group for people with ME. They are a membership organisation run by a committee of volunteers and have no paid staff. Most of the committee have ME themselves.

#MEAction

#MEAction is an international network of patients empowering each other to fight for health equality for ME. It is not structured like a traditional advocacy organisation. They are a platform designed to empower patient advocates and organisations, wherever they might be, with the technological tools and training to do what they are already doing –better. They were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force. This is exactly what I plan do to with the rest of my life, even if I get better, I’ll never stop advocating for people with ME.

Now for anyone who would like to challenge themselves whilst raising money for a ME charity you might be interested in…

Walk for ME

Friends and family of a ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME. The aim is to get as many friends and loved ones as possible to do a sponsored walk or other sponsored event during ME Awareness month in May, although it can be held in any other month. Walk for ME supports Invest in ME and ME Research UK. Both of which fund biomedical research and therefore offer the potential to help millions of people get their lives back. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Something a bit easier…

Use the Easyfundraising website to collect free donations by shopping online. First you select your charity of choice on the easyfundraising website, I chose Invest In ME. To raise money, instead of going directly to the retailer website, log into easyfundraising first and click on the retailer you want to shop with. You’ll then be taken to the retailer’s website where you shop as you would normally. But because you visited easyfundraising first, your cause gets a donation.

Thank you!

Now I have some public thank you’s to give.

My friend Jo recently completed a 5k swimathon for Invest In ME, Marie Curie Cancer Care and the Swimathon Foundation. It’s not too late to sponsor her! Here’s a post-swim message from Jo…

“With your help, I’ve raised £235 online for Invest In ME so far. I completed the swim (all 200 lengths) last night in 1 hour 50 something – I was too tired at the end to pay attention to the time I was told. It’s my slowest time but considering how little training I did it wasn’t bad! I was 2nd in my pool last night out of 6 people doing the full 5km so I’ll just remember that fact! I lost count at 28 lengths, kept going for a good long time and had a break at 112 (I asked my counter), then sped up to 150, another few sips of squash and then to the end. A hat and goggles that were too tight combined with my lack of fitness gave me a killer eye/headache so I’ve been pretty lazy today. Almost feeling back to normal now with just achy shoulders. I know many people, especially my ME suffering friends would be ecstatic with that sort of recovery rate – that’s why I’ve raised this money to go towards researching this horrible disease.”

My friends Gillian and Ritchie are taking part in a 5k inflatable obstacle course, Gung-Ho! this month to raise money for Invest In ME. Please support them by sponsoring them in their bouncy endeavour! In Gillian’s words…

“My dear friend Phoebe has ME and since her diagnosis her life has been drastically altered resulting in her having to give up on most of her life time goals and ambitions. Even day to day life that we all take for granted are a struggle for her. I’m sure if you take the time to read her story you will understand how devastating this illness is.”

My 12yr old niece Amelia, with assistance from her mummy, my sister Emma, held a charity Pamper Afternoon Tea for mothers and daughters on Mother’s Day. They raised £631 which was split between Invest In ME and Amelia’s gym, Astro Gymnastics, which is in need of bigger premises. Amelia wanted to include a ME charity in her fundraiser because…

“I chose to raise money for Invest in ME because it is a charity that is very personal to my whole family. My Auntie Phoebe suffers badly from this condition and is currently unable to work, socialise or have any kind of normal life. So it is the best charity we could raise money for. It affects many people and raising money for Invest In ME could help other people with ME. It also will help raise awareness for ME. It is a very misunderstood illness and more people should know about it. We would love for Invest in ME to find a cure for this terrible illness.”

My mum happens to share her birthday with ME International Awareness Day, and this year she is donating her birthday to Invest In ME! She is holding a fundraising birthday garden party and instead of gifts and cards she is asking for only donations. In preparation she is currently experimenting with methods of keeping vast quantities of baked potatoes hot, and she is having hooks put into the back of the house to attach a tarpaulin, in case of rain. Although, so far in her life it has apparently only ever rained on her birthday twice, so the odds are in our favour.

My friends Chiara and Alex are getting married this summer and instead of gifts they would prefer their guests donate money to a charity, a concept that I love. They have chosen Invest In ME as one of their charities.

I have a few other friends who have floated the idea by of fundraising for Invest in ME, and hope to do something in the future, you know who you are, and thank you to you too.

Lastly, all the people who read my blog, who share it, who visit me, who help me with the boring practical stuff, who read the ME articles I post on Facebook, who sign the petitions I share, who keep in contact with me, who send me the articles, recipes and music you think I’ll like, who send me surprises through the post, thank you. x

Post Eleven. From Healthy To Not Healthy.

Part Two – Finally diagnosed

If you’re new to my blog I’d recommend you read Post Three. From Healthy To Not Healthy. Part One – The beginning first.

I don’t particularly enjoy writing about this, dredging up stuff from the past couple of years is hard going, but I’m a perfectionist. So, for the sake of ‘completeness’ I have finished writing this story, it’s only taken me seven months! It also turns out that Part Two is really very long, but I want it over with, so you’re getting a really long post, rather than a ‘Part Three’.

Ok. So I was signed off work on Monday 15th December 2014, I wasn’t in Antarctica and I didn’t know what was wrong with me.

During my time off work I spent a lot of time researching my symptoms, which can be dangerous I know. But in my case, it led to my diagnosis. Like most people who don’t know anyone with ME, I didn’t know a great deal about it, not that I was completely ignorant, I did know that it had the ability to completely derail lives. But I researched and I read everything I could find about ME, and well, it was eye-opening. Everything kind of fell into place, I was quite sure this was what was wrong with me. I brought it up with my GP who agreed that it fitted my symptoms and she suggested I ask about it at my upcoming neurology appointment.

My neurology appointment was early-January. The consultant however refused to talk about ME which I found that odd, you know, given that ME is a neurological illness. My first experience of just how crap the medical community can be when it comes to ME. Anyway, all she cared about was ruling out MS, so she booked me in for a MRI scan of my brain. She did have one helpful suggestion and that was for a migraine preventative medication. I’ve been taking this medication ever since, I still get roughly two migraines a month, but that’s a huge improvement, so it’s a thumbs up for the drugs.

My MRI scan was in early-February, it was great fun! It was my first MRI and I found it fascinating. Around this time my GP also started ordering blood tests. If MS was ruled out, to reach a diagnosis of ME she had to rule out a whole host of other illnesses with similar symptoms first.

In early-February I also had a meeting with one of my colleagues, she was the benefits adviser at the charity I worked for. I was still receiving sick-pay from work, and would do so for another four months. I couldn’t possibly conceive of this situation arising but I felt it was a good idea to find out what benefits I would be eligible for, should the need arise. I left with lots of information and phone numbers. I knew exactly who to phone and when, should I still be off work after my sick-pay ends. I kept insisting this wouldn’t happen, but I like to be organised. The information she gave me turned out to be invaluable.

Around this time I was still able to go out socially on occasion. I met my mum for lunch once a week and met up with individual friends every two weeks or so. I went to an Ólafur Arnalds concert in Glasgow one evening and I didn’t suffer afterwards. I was going out for short walks, I discovered yoga and was practising almost daily at home using YouTube videos. I certainly wasn’t back to my healthy self but felt like I was getting better and was sure I’d be back at work fairly soon.

In early-March I got my MRI results, confirming that I didn’t have MS. My blood tests all came back negative, apart from my Vitamin D test which showed a slight deficiency, not unusual for someone living in Scotland. With all the other possibilities ruled out, and because I met the ME diagnosis criteria, I was then diagnosed with ME. Well, it actually felt like less of an ‘official’ diagnosis, but more like a ‘let’s just settle with this shall we?’. Now, here is the advice my GP gave me, she said, “you’ll find lots of information about ME online”. Yes. She basically told me to Google my (serious, debilitating and life-altering) illness. Back when I first suspected ME my GP did actually refer me to Edinburgh’s ME Service at Astley Ainslie Hospital. They wouldn’t be able to cure me (there is no cure), but they would help me learn to manage my illness and help me cope with it. So at this point they were my only hope. I felt pretty lost and the sum total of my knowledge of my illness was from the internet.

Something I forgot to mention in part one – A few months previously I had also been referred by my GP to a gynaecologist. Since my ME symptoms had begun my menstrual cycle also got worse (you probably don’t need the details), and I suspected I had endometriosis, apparently common in combination with ME. I first saw the gynaecologist in November (2014). She didn’t believe I had endometriosis and refused my request for a diagnostic laparoscopy to at least rule it out (you’ll need to remember this detail for later). But she did suggest a Mirena Coil, a hormone releasing IUD (intrauterine device) that sits in the uterus. It would hopefully, eventually stop my period altogether, or at least make it more bearable. She told me to go away and think about it. She also said if I wanted to go ahead she would prefer to insert it under general anaesthetic, because I haven’t had babies (I thought that was a bit over the top). My next appointment with her was late-March, I assumed it was to have the coil put in because I had already phoned her receptionist to say I wanted to go ahead, but the appointment was actually just to ask if I’d thought about it. I told her I had, that I wanted to try the coil, that I didn’t want an anaesthetic and could she do it there and then. She agreed but she warned me it would be incredibly painful. I actually didn’t find it painful at all, uncomfortable yes, but not painful, she was amazed. I guess when you experience pain daily you end up with a higher tolerance for pain? Anyway, I left feeling really positive, a potentially period free life and I thought my health was on the mend, things were good.

Unfortunately, all was not good. The next day I felt dreadful, not just the expected cramps and bleeding from the coil but all my ME symptoms. My symptoms got increasingly worse, worse than anything I’d experienced yet, and the cramps didn’t ease up at all. After two weeks I couldn’t take it any more and I called my GP and asked to have the coil removed, initially they refused, telling me to give it longer, it was only when I told them I’d yank the thing out myself if they wouldn’t do it that they told me to come in that day. The cramps eased instantly after it was removed. But unfortunately my ME symptoms didn’t get better. It appears I had suffered a relapse, a severe worsening of my symptoms that have never improved.

A few other things (upsets) happened around this time. I found out that my referral to the ME Service hadn’t actually been done. My GP had forgotten. I found out when I called Astley Ainslie Hospital to ask how long I could expect to wait, they had never heard of me. My GP did then make the referral but by then I was 6 weeks behind on the already 14 week waiting list. It was also around this time that I received disappointing news about Antarctica. I had previously been told that if/when I was well again I wouldn’t need to go through the selection process again, I just had to let them know when I was ready for the next season, and I’d be on the team. Unfortunately this had changed, and I was told that if I wanted to go to Antarctica in the future that I’d need to re-apply and go through the rigorous selection process again. In terms of Antarctica, I was back to square one. This of course was a huge blow and I felt absolutely devastated.

Now, despite my research I still knew very little about ME. It seems there was no such thing as a ‘ME specialist’, well not according to my GP. So I went back to Google. I found a doctor who apparently specialised in ME who worked at a private hospital in Edinburgh, I made an appointment. I saw him in early-April and I can tell you that it was a waste of time and a waste of money. He did confirm my diagnosis, but he had no information, no words of wisdom, no advice. He did however tell me that I’d be better within a year. You’ll probably have figured out that he was quite wrong about that.

One of the better things that happened around this time was my discovery of a local support group, Edinburgh ME Self-Help Group (edmesh). What would I do without edmesh! The support I have received from this group of wonderful people has been invaluable and I have made some really good friends. It was through this group that I heard about another doctor in Edinburgh who was knowledgeable about ME, he was (bizarrely) based in the Infectious Diseases Department at the Western General Hospital in Edinburgh. I asked my GP for a referral and she obliged.

In the meantime I managed to break my foot. It happened one evening when a friend was picking me up to take me shopping. Now, ME affects my balance and it causes me to become easily disorientated. I was looking for her car outside my flat and I stumbled, it seemed a very minor stumble at the time, I didn’t fall, but my foot was in absolute agony. I realised there was no way I could walk around a shop so she came up to my flat for a cup of tea instead, as I sat with a bag of frozen broad beans on my sore foot (the only thing in my freezer I didn’t mind sacrificing). It wasn’t until she left that the most impressive bruise of my life appeared on my foot. I called NHS 24 and I was told to go to A&E, an x-ray confirmed I’d broken my 5th metatarsal bone on my right foot. I was discharged with a big black medical boot and very stylish NHS walking stick. I don’t think it’s unconnected that before ME I had never broken a bone, and this was my second bone break, having also broken a toe in November, also due to my ME disorientation/lack of balance.

I saw the ME/Infectious Diseases doctor at the Western General in mid-May. I suppose, being honest, he didn’t really have much in the way of new or useful information for me, but, he listened to me. He gave me an hour and a half to talk. I don’t think I can put into words how good it felt to finally have a medical professional with a knowledge of ME actually listen to me, and believe me, to show me understanding and compassion. We went through my entire medical, and life history. We also bonded over a love of Icelandic music! He too confirmed my diagnosis of ME. All he could have suggested was that I attend the Astley Ainslie ME Service, which I had already been referred to so there was really nothing more he could do. But he helped me enormously, like I said, he was the first example of a doctor who truly believed me and who acknowledged what a devastating and life-changing illness ME is. I really don’t think anyone can understand the importance of this, not until you’ve been there yourself. He also spoke in depth about why this might have happened. No one knows the cause of ME, so it’s only ever guess work as to why a person gets this illness. For some it’s a bit more obvious, like an infection, or a flu that never goes away. But, this is what he suspected to possibly be the reason for me. Basically he thought it could be a combination of various factors…the bladder symptoms could have been the catalyst, that of course then triggered a lot of anxiety and stress, in regards to Antarctica. There were the unnecessary antibiotics I was prescribed when my bladder symptoms began. There was the massive emotional trauma of having to pull out of Antarctica. The contraceptive pill and the coil both caused me to relapse, so there is definitely a link there. I was under considerable stress with work, both with my everyday work stress, I was leaving work each day in a state of panic, and of course I was incredibly anxious about whether I would be granted unpaid leave for Antarctica or not, and it dragged on all summer. I also had that day volunteering at Loch Tay and the undeniable impact that that had on my bladder symptoms. Stress and anxiety cannot cause ME, but they do exacerbate it. It’s so hard to know how or why exactly this happened. Was the bladder the catalyst? Was it a coincidence? Would I have deteriorated into full-blown ME without any work stress? Would I still have developed ME if Antarctica had never been in the picture? I don’t imagine I’ll ever know.

It was mid-June when I started my first of ten sessions at Astley Ainslie Hospital. The doctor I saw was a psychologist. To be perfectly clear, this is not because ME is a psychological illness, it is not. This doctor was not there to cure me, he was there to help me through this new diagnosis, to help me understand how to manage ME and basically to support me through this massive life changing event. I saw him roughly once a month until my ten appointments were used up (June 2015 – April 2016). I found the service incredibly helpful. It was almost like I was attending one on one tutoring on the subject of ‘how to live with ME’. Having someone to speak to every month who truly understood the illness, and who fully understood the impact that this devastating illness has on a person’s life was incredibly helpful, it’s a great shame that the service doesn’t have the funding to offer more than ten sessions.

Now, I had hoped that I wouldn’t have to start claiming benefits, but my sick pay was due to come to an end and I needed an income. Due to my job I already knew how awful the process of applying for benefits in the UK is, I have supported many people through the process. But my god, I had no idea until it was me just how bewildering, stressful and inhumane the process actually is. Long story short, there were many tears, panic attacks, periods of utter rage, lots of forms to fill out, phone calls with incompetent DWP (Department for Work and Pensions) staff, letters from the DWP that didn’t make sense, exclamations of “I’m giving up, I can live on no money!” and more tears…but I do now receive contribution based ESA (employment and support allowance). I receive contribution based ESA because I have paid enough national insurance contributions, otherwise I would be on income related ESA. Within ESA you get placed either in the support group or the work related activity group (WRAG). WRAG is for claimants who the DWP consider will be capable of work at some time in the future and who they consider are capable of taking steps towards moving into work, and they are sent to various ‘work related activities’. The support group is for claimants who the DWP consider to have such severe health problems that there is no current prospect of their being able to undertake work or work-related activities. I am in the support group. My benefits journey continues to be rocky, the intimidating and often completely unnecessary letters are frequent and always result in me having to phone them to ask what the heck the letter means. They have accused me of doing ‘too much voluntary work’, I don’t do any voluntary work. They can demand copies of my bank statements whenever they want. And at any point they can send me renewal forms, and I’ll have to go through the process all over again, but I have no idea when that will be, could be tomorrow, could be in three years. I can never fully relax, and that, I believe, is just what they want.

In the summer of 2015 I made a big change and I moved out of Edinburgh back to my hometown of Peebles in the Scottish Borders. My benefits weren’t/aren’t enough to live on and pay my mortgage, so by moving out and renting out my flat I would have some additional income. It was also the only way I was able to save my flat and not have to sell it. I now live in a very tiny but charming cottage and my mum, who does a lot to care for me, is much closer. I’m also less isolated here, thanks to not having 98 stairs to contend with (my flat was on the top/5th floor of a tenement, and there was no lift).

In February 2016 I decided to start seeing a counsellor. I only had two appointments left with the ME Service at Astley Ainslie Hospital and I knew I would miss having someone to speak to. Someone completely non-judgemental and empathetic. I still see her once a week and she is very handily only a very short walk from my cottage. By overlapping counselling with Astley Ainslie it meant I had already established a relationship with my counsellor/therapist when the Astley Ainslie sessions ended, and I felt less abandoned.

My move to Peebles meant a new GP. And this is the reason I may never be able to leave Peebles, unless my GP would be willing to relocate her family and follow me wherever I go. She is the best GP I have ever had. A good GP when you have a chronic illness is so incredibly important. I can go to my GP with a new symptom and she won’t brush it off as being ‘part and parcel’ of my ME, like my previous GP did. She can’t cure my ME, she admits that the NHS is ‘crap when it comes to ME’, but she can, and she does, take each and every one of my symptoms seriously. She is investigating my symptoms one by one, to ensure we aren’t missing anything that could be treatable. We started with my gynaecological symptoms. She referred me to gynaecology, my first appointment was mid-March 2016. Now, remember back to March 2015, I was refused a laparoscopy, because according to my GP and that gynaecologist “those symptoms are just due to your ME”. Well, my new gynaecologist did book me in for a diagnostic laparoscopy, which happened in June (the same day of the disastrous Brexit result) and guess what, I have endometriosis. Fancy that, I, the patient, was right. The treatment for endometriosis, when taking into account my ME, is very tricky. So my appointments with the gynaecologist are ongoing, while we think about the best course of action.

You may also remember that my ME began with bladder symptoms. These symptoms were ongoing, so the private urologist I had seen in the summer of 2014 referred me to his NHS clinic. I would have the continuity of seeing the same doctor, but without the bills. I saw him again a couple of times but unfortunately nothing much came of it. At my last appointment he said he would see me again in 6 months, that was in July 2015 and I’ve been waiting over a year and a half for that appointment. So I recently decided, for various reasons, to withdraw myself from his waiting list. My current GP is going to refer me to a different urologist after I have the gynae stuff sorted out. One thing at a time.

Round about mid-2016 I heard about a medication that sounded promising, Low Dose Naltrexone (LDN). Naltrexone in its ‘usual’ dosage of 50 – 300mg is used in the management of alcohol and opioid dependence. However, someone, somewhere, some time ago discovered that many autoimmune diseases, including ME, respond positively to Naltrexone at a very low dosage of 0.5mg – 4.5mg. So, I did my research, I read the anecdotes and I spoke to fellow ME sufferers who take LDN. My main concern was if the benefits would outweigh any side effects. Due to my propensity for side effects (an ME thing), I usually start a new medication with a great deal of trepidation. The side effects of LDN however seemed to be minimal, and the benefits for many are phenomenal. I decided to give it a shot. Unfortunately LDN is not available on the NHS, only a few, very broad minded, and well informed doctors will prescribe it. My GP is great, she wanted to prescribe it but couldn’t, practice regulations or something. So I get it privately from a clinic in Glasgow, thankfully they do their consultations over the phone. Some people, often it depends what illness they’re taking it for, can start immediately at 4.5mg, others, especially ME folk, are advised to start low and increase the dosage very slowly. It’s not uncommon for each increase in dosage to result in a period of increased symptoms. I’ve been taking LDN since August 2016, not even 8 months ago, and I’m still only at 1.5mg. So far when I increase my dosage I’ve had to drop back down, then try again. It could be years before I reach 4.5mg. I could also find that my optimum dosage is lower than 4.5mg. It’s a slow process of trial and error, even after finding what I feel is my optimum dosage, I will need to give it a year or so at that dosage before I can say with any confidence whether it’s working for me or not. I take it in liquid form with a 5ml syringe (not a needley syringe) so adjusting the dosage is easy, I drop it in a glass of water and gulp it down while trying to ignore the awful taste. So far I haven’t noticed any positive effects on my ME, however, my endometriosis symptoms have improved somewhat since I started LDN, enough that I am putting off any further treatment, to give the LDN more time. For information on how LDN works click here.

I’ve written in previous posts about my tonsillitis. While the tonsillitis has gone, I think, it did leave behind a lump in my left tonsil. Because of this the ENT doctor wanted to remove my left tonsil so it can be biopsied. I asked him if he could please remove both while he’s in there, after all I did have tonsillitis in both tonsils originally, so it makes sense to get rid of both of them. At least I’ll know with certainty that future sore throats cannot be tonsillitis. My tonsillectomy is happening a week tomorrow, eek!

I had a referral to the pain clinic at the Borders General Hospital (BGH) recently. Unfortunately, despite the doctor being really nice, it wasn’t of much help. All he could offer me was a pain management course, attending once a week for ten weeks, and it focuses a lot on exercise. Thankfully the doctor I saw understood how inappropriate this would be for me, with ME, so that was that. I’m still on the hunt for the perfect pain relief. The side effects are too severe from most that I have tried, and due to being on LDN I can’t take any opiate based medications (my GP said she would make an exception for morphine however, if I need it after my tonsil op, but I will have to stop taking LDN while on the morphine). In the meantime I have paracetamol, ibuprofen and ibuprofen with lysine, none of them erase my pain, but they can offer some mild relief with no side effects.

For a while I thought I might also have Postural Tachycardia Syndrome (PoTS), common in combination with ME. So I saw a neurovascular doctor recently and it seems actually that PoTS is unlikely. It’s probable that my PoTS-like symptoms are in fact ME symptoms, the erratic heart rate, dizziness, lightheadedness and the almost always feeling on the verge of fainting. One of the key characteristics of PoTS is that the dizziness is relieved by lying down, which is not the case with me. My dizziness is becoming worse and is constant, possibly aggravated by the withdrawal of one of my medications. Something to add to my list of symptoms that needs further investigation.

We’re pretty much up to the present day now. I think after I have fully recovered from my tonsillectomy it will be back to the bladder investigation, and a referral to a new urologist. I’m sure that will involve some unpleasant and invasive stuff. I’ll keep you posted!

Post Ten. What’s My Future?

*Warning – This post touches on a very sensitive issue in the last two paragraphs, maybe especially so for someone currently experiencing bereavement. My intention is not to upset or shock. I am simply being honest about how my illness affects me, and what my future may hold, should a cure or treatment for ME never be found.

I read an article recently that had me bawling my eyes out for most of that day. What I read was nothing I didn’t know already, but every now and then I am reminded of the bleakness of my situation, and I become overwhelmed by grief, hopelessness and uncertainty. The article is about NLP (Neuro-linguistic programming) which I have no interest in, so I’m not really sure why I read it, but these two paragraphs were what really got to me…

“The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS; if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.”

“We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests – we need to fight against our natural impulse to pretend we are just fine when we aren’t – in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person. And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability.”

“We need to fight against our natural instinct to be active.” This might be the most depressing sentence I’ve ever read. Because I know, when it comes to ME, that it’s true, and I hate it, I hate that it’s true. I’m trapped in a world where over-exertion (physical and mental) will cause my symptoms to worsen and possibly cause permanent severe disability. But if I never over-exert myself and stop myself from doing all that comes naturally to me, then my mental health will deteriorate. I already take steps to avoid over-exertion. For example… Sainsbury’s deliver the bulk of my groceries and my mum tops me up between deliveries. I pay someone to clean my home. My mum puts my bins out, changes my bedding and waters my plants. After a bath or shower instead of using precious energy to dry myself with a towel I put on a dressing gown made of towelling material and lie down in bed until I’m dry. I use a shower stool. I wear noise cancelling headphones on car journeys. But despite the many steps I have taken to decrease the use of my limited energy I know I still do too much. What else can I give up? Visits from friends and family? Phone conversations? Preparing and cooking my meals? Baking? Writing this blog? Writing emails? Texting? Social media? Brushing my teeth? Washing? Getting dressed? Putting face cream on? Filling my kettle? All these things can cause my symptoms to worsen, but they are also essential for my emotional well being, not to mention my personal hygiene. So what on earth am I meant to do?

This current wave of fear and confusion comes at the same time that I’ve started taking the use of my heart rate (HR) monitor more seriously. Many people with ME use a HR monitor to help with pacing, in order to avoid over-exertion, and the post-exertional symptoms that go along with that. The aim is to stay within our anaerobic threshold. The anaerobic threshold is the heart rate beyond which we draw on energy reserves we don’t have. The threshold is around about 60% of a person’s maximum heart rate. So I should aim to stay below a heart rate of 110 beats per minute. I wear a heart rate monitor and it beeps at me when I go over 110. Saturday was a bad day, I was in day three of a migraine and I was feeling very low in mood. On a bad day I can’t manage as much as on a normal, or better day. This was reflected in my heart rate. Every time I picked something up, like the kettle, my phone, a mug of coffee, I would hover between 130 and 140 beats per minutes. I reached 136 when I put my face cream on, and I reached 167 when I made my breakfast. I started writing a facebook message to a friend and within the first sentence I reached 135. I reached 154 when I started writing this. I started to think of my HR monitor as the enemy, and was worried it was only going to become a source of anxiety. I felt like I was going to have to become a slave to my HR and ‘behave’ by staying below 110, and to do that I would have to give up, well everything really. And that made me feel even more depressed.

After I read that article and after my first day of monitoring my HR I started to wonder if I should cancel all my upcoming plans. Should I cancel coffee with my mum on my birthday this week? Should I cancel my sisters, niece and nephew visiting the Saturday after my birthday. Should I cancel the plans I have for friends to visit me over the next few months? Would cancelling these things mean I was ‘behaving’, and doing what I should be doing to get better? Or, by attempting to enjoy what little I can of this wretched life am I destroying my only chance of recovery? If, in ten years time, and I’m no better, will I look back and blame myself for doing ‘too much’? Or will I understand that I needed to do those things in order to maintain my mental health? This has been going round and round in circles in my head. There’s no answer.

I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.

There is however something I can do to regain control of my future. There is a way I can put my future in my hands. And it begins with completing my membership with Dignitas. I’m not saying I will seek their help with assisted suicide this year, or the next, or in the next ten years, but it comforts me that this is an option. I don’t want to live out the rest of my possibly long life as incapacitated as I am now. I value my freedom and my independence far too much. My life as it is now is simply not enough for me.

A ‘Swiss death’ is not a knee jerk reaction on my part. I do suffer from depression, a common side-effect of chronic illness, but my membership request to Dignitas pre-dated my depression. I have known since 2002, during my final year at university that assisted suicide was a possible option for me. That was when my dad was diagnosed with early-onset Alzheimer’s Disease. It was then that I started thinking about my own mortality, and how I would want to die if I ever got diagnosed with an incurable or terminal illness. I never thought I’d get that illness twelve years later. The Ron Davis quote that I shared in Post Nine seems appropriate here… “The good news is, these patients don’t die. The bad news is, these patients don’t die.”. Many people think the severity of an illness is based on if it can kill you or not. Yes, a premature death is devastating. But so is a long life, where the only promise is one of pain, suffering and isolation.

By the way, just in case it doesn’t go without saying. Obviously my preference is that that I regain my health (sooner rather than later) and I go back to living and enjoying my life. That is what I want more than anything.

Post Nine. Why I Write This Blog.

I came across a blog post from The Mighty this morning and I urge you to please read it. It explains so well why someone living with chronic illness might share so much about their illness on social media. I’m aware I might have Facebook friends who think I’m oversharing, or attention seeking. I’d like to think that anyone who knows me well enough would know that this is not the case. I wonder if people think that I’m too ‘negative’. All I can say is, I’m realistic, I’m honest, I don’t exaggerate and to be frank, if anything, I probably downplay the reality of my illness. I don’t share everything. I possibly use humour too much, to make you feel less uncomfortable. And so begins why I share so much about my illness…

ME is a serious and debilitating illness, I want you to understand that.

It is unfortunate that the reality of living with ME is really very shitty, and that’s putting it mildly. So when I’m being honest about my illness, it’s going to come across, as guess what, really very shitty. ME is an incredibly debilitating illness. For moderate to severe patients (I’m on the severe end of moderate), living with ME is said (by many experts) to be “like living with late-stage cancer, advanced stage AIDS, or congestive heart failure, for decades”. ME is unfortunately such a massively misunderstood illness though that those comparisons may have shocked you, or even offended you. I am absolutely not downplaying the horrendousness of AIDS, or cancer, or congestive heart failure or any other serious and life-threatening illness. I am not looking for sympathy. I am trying to make you see ME more clearly for what it is. If being honest about my really very shitty illness is ‘negative’, then so be it. (Why is negativity such a bad thing anyway? Emotions and feelings can come in both positive and negative varieties. I personally don’t feel it’s healthy to repress what I’m feeling, I let it out, I ‘feel’ it, good or bad, and if it’s negative, I work through it, and eventually move on, and this will sound really clichéd, but maybe I’ll have learnt something from it.).

Not convinced that ME is that debilitating?*

I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS

To spread awareness.

My blog started because I wanted to raise awareness of ME. I know that there are many people in the world, including health professionals who do not take this illness seriously. I also know there are people in my life who do not take this illness seriously. Mainly due to being uninformed. But also, my friends and family (apart from my mum) only see me when I’m feeling well enough to see people. So of course you may see me and think, ‘ME doesn’t seem that bad’. Unless you are my mum, you have never seen me on my worse days, or possibly even my ‘normal’ days. You have only ever seen me on the ‘better’days, the days that I can scrounge up a bit of excess energy to have a conversation (I had no idea before ME how much energy was required to hold a conversation). You also see me putting on an act, I often pretend to feel better than I am. But also, when I am with people, I don’t want to go on and on about ME, I’m already living it, I don’t want to be always talking about it! It’s also an invisible illness, you can’t see my pain, my exhaustion, my weakness, my dizziness, my brain fog etc. You also don’t see me in the hours or days after your visit, when I am suffering for it, when every inch of me is in pain, when I don’t have the strength to hold my phone, when I’m crawling because my legs are too weak. So I am probably partly to blame for the people in my life not knowing the reality of my life with ME. The problem is, when I am feeling too unwell for visitors, I simply cannot have visitors. And the majority of my days are spent being too unwell for visitors. I recently had someone ask me how I was doing. I told them ‘really weak, achy and slowed down, like there’s an elephant sitting on my shoulders’. In reply they asked if I had a bug, or if it was an extra bad ME day. But no, it was a very normal, nothing out of the ordinary, run of the mill ME day for me. After two and a half years of this illness, people still struggle to understand. I hope this blog will help with that. Also, and most importantly, no one is going to fund research for an illness they aren’t aware of.

It gives me a sense of purpose that I don’t get elsewhere.

It gives me purpose and a sense of accomplishment. My purpose before I became ill was to help people. I worked, alongside an army of incredible volunteers, for a homeless charity redistributing surplus food from the food industry to those who needed it the most. I supported people with all manner of obstacles and difficulties in their lives, people excluded from their families and their communities, on their life journey. I could see how I was contributing to the world, to my community, to people’s lives. I could see the difference I was doing. That is what I did for a living. It was a privilege, and I was working with some of the most inspiring people I have ever met. In that job I had found my vocation in life. A friend of mine at the time told me I was her hero, that she was so proud of me. I now haven’t been to work for over two years. I no longer contribute. I’m not helping anyone. I have no purpose. I don’t feel that I have anything to offer anyone. I’m not making anyone proud. That was until I started receiving some really wonderful feedback about my blog. Then I got my first message from a stranger. A stranger who was newly diagnosed with ME, and my blog had helped them feel less alone. For the first time since I had been off work I felt I had accomplished something, something that had helped another person, and that makes my blog all the more worthwhile.

I have something that is mine, that I am in control of. It makes me feel a bit more ‘normal’.

My life is ruled by my illness. ME affects every single aspect of my life, there is not one thing that it hasn’t had an impact on. Daily tasks that were once so easy, so natural, are now mammoth tasks of endurance. All of my decisions these days revolve around my illness, I no longer have the freedom and independence that I valued so much. I’m not in charge, ME is. But my blog is all mine, I control the content, I control when I publish a post. Of course ME dictates when I can write and for how long, and it always punishes me afterwards. But I can bitch about it all I want in my blog. Mwa ha ha ha. 😉

It helps with the isolation and loneliness.

Back when I had a life (pre-ME) I would occasionally cherish having a few quiet days to myself, knowing I wouldn’t see another human until I was back at work on Monday. However, having two (plus) years to yourself when it is not through choice, when it is forced upon you through illness is horrible, and boring, so mind-numbingly boring. It is frustrating. It is upsetting. It is depressing. It is lonely, very very lonely. The isolation, I have found, can feel as bad as, if not worse, than the illness that brought upon the isolation. This illness prevents me from keeping in touch with people with the frequency and regularity I used to (I need both the required energy and a certain level of cognitive function to do that). And that results in people not contacting me as much as they used to. To go from being surrounded by people every day at work, the gym, the pub, the supermarket, the bus, or a restaurant, a cinema, Leith Walk, etc, to being almost housebound so very suddenly has been heartbreaking for me. It is incredibly difficult to cope with. Like in the post I shared from The Mighty, my world has become smaller and smaller, and I am alone most of the time. We need human contact, and my social media accounts, and my blog, have become my main source of interaction with other humans. I’m so grateful to at least have been struck down with a long term illness during the age of social media. When I share something about my illness on Facebook, whether an article, or one of my blog posts, I hope for ‘likes’ or comments. Not to feed my ego, but because it shows me that I am being heard. At least one person, for a short time, was thinking about me, and I feel a little less lonely, a little less forgotten and a little less invisible. And when, like me, you are so starved of human company, that one ‘like’ can keep me going for the rest of the day.

*Sources…

www.meaction.net

Dr Nancy Klimas. Readers Ask: New York Times Interview

Dr Nancy Klimas, Dr Daniel Peterson, Dr William Reeves and Prof Mark Loveless quotes

Ron Davis quote