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!