Post Twenty One. The Wheelchair Has Arrived.

So, the much anticipated wheelchair has arrived!

It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to charge the batteries, how to fold and unfold it etc. He also made me sit in it. This was the very first time in my life that I have sat in a wheelchair, and I was pleased to find that it wasn’t as scary as I had imagined, it didn’t feel wrong, weird, or foreign. It actually felt fine, and for a travel wheelchair, it was surprisingly comfortable.

There was however a downside. I learned that despite it being the lightest electric wheelchair in the world, it is too heavy for me to lift. This means I am unable to fold and unfold it myself. It’s around 20kg, I could easily lift 20kg before I had ME, but I guess I hadn’t quite realised just how weak I had become, or maybe I was in denial. I have tried to practice folding and unfolding it, and if I really force myself, on my ‘better’ days, I can just about manage, but only by severely over-exerting myself. So this was a huge blow, and I did feel disappointed. It means that the wheelchair won’t provide me with quite the level of independence I had hoped for, given I will be relying on others to lift, fold and/or unfold it for me. But, there’s nothing to be done about that, a lighter model does not exist, so there’s no point crying over it. The wheelchair will still provide me with the opportunity to get outdoors a bit more, and to bits of the world that have, since I’ve been ill, been inaccessible to me, and that is what matters.

It took a while before I felt well enough to get outside for a test drive thanks to a nine day migraine and being generally very unwell recently. So my first outing was around ten days ago, I went to a park near my mum’s house.  These are some things that I learned…

Going downhill is scary.

Going uphill is just about manageable, but uses a lot of battery power.

Smooth surfaces are a joy.

Bumpy/uneven surfaces are less good.

Grass is an absolute no no.

Pavements with a camber, that slope down towards the road are not good. Not unlike a shopping trolley the wheelchair kept veering to the side, towards the road. I learned that by almost flying onto the road. Luckily my quick reactions stopped me from potentially being flattened by a massive lorry.

I did feel nervous about passing any pedestrians, thankfully the only people I saw smiled at me. But it is a small friendly town, so they probably also would have smiled had I been walking. At least I hope so, I don’t want ‘pity’ smiles.

What surprised me was just how exhausted I felt afterwards. I was only out for half an hour, but I was shattered and the payback was pretty severe. It took a week before I felt well enough to have another practice.

The second practice was a few days ago…

I began in my mum’s garden, testing how it handles on a light dusting of snow. The makers of the wheelchair do advise that it should never be used on snowy or icy surfaces, but on the smooth paving slabs in my mum’s garden, with a little amount of snow, it managed fine.

It does not like gravel, it stubbornly refused to move while the spinning wheels dug holes in the ground.

I was reminded that it really does not like bumpy surfaces. The pavement in front of my mum’s house, I had thought, counted as a smooth surface. I suppose I never paid much attention when I was on foot. But the wheelchair did not like it at all. Again, it wanted to veer off onto the road. I had to take it incredibly slowly, and I really felt like I was pushing the wheelchair out of it’s comfort zone. It was also really uncomfortable for me, as my skeleton got a good shoogle, as I bumped along the uneven pavement. It struggled even more as the pavement turned an uphill corner. I ended up having to get out of the wheelchair, switch it into manual mode and push it round the corner and up the first section of the hill. Realising that going up this hill, with it’s very bumpy pavement, with a coating of snow was not going to happen, I went down into the grounds of a nearby hotel instead. Again the surfaces here were really uneven and pot-holey, I had to give up pretty quickly, and pushed the wheelchair back to my mum’s house, it was hard on my arm muscles, but it gave me something to lean on, like an incredibly expensive zimmer frame.

So that’s been my wheelchair experience so far. The first outing was definitely a success. Whizzing along the paths in the park and ending up next to the river was wonderful. Without a doubt I was able to travel further than my legs would have safely carried me. The second outing was disappointing, and I felt quite low afterwards. But I did learn something, it was educational, so therefore still useful.

My health has been really poor recently, especially with my marathon migraine. I’ve also had some emotionally draining situations to cope/deal with, completely unrelated to the wheelchair, but this too takes a huge toll on my ME symptoms. It has been a source of anxiety for me that I haven’t been able to practice with the wheelchair as frequently as I would like. Understandably I have lots of people asking me how I’m getting on with the wheelchair. And I have to respond, to the people who paid for it, that so far I’ve only had one, or two outings in it. This leaves me with a lot of guilt. That I’m letting these people down, and not giving them their ‘money’s worth’. On my second outing I began to panic and thought I would need to offer everyone a refund. My mum reassured me that the people who made contributions to my wheelchair fund did so for me, not for themselves, or their viewing pleasure. I do still wish I was able to use it more frequently, but like always, my illness dictates everything.

I think this is a good time to remind people, and myself, of something. Having the wheelchair has not cured my ME, it has not given me a new body, and I do not suddenly have more energy. It will allow me to go outdoors more frequently. But these outings will take place on the days that my mum would have otherwise visited me. So I’ll be doing pretty much the same amount of activity, in term of duration, but now, some of that activity will be able to be outdoors, rather than in my home. That, is how this wheelchair will change my life. I also have to accept that I’ll get less use of it during the winter, while it did manage ok in my mum’s garden on a small dusting of snow, I do know better than to experiment with it in deep snow, or on a sheet of ice. I will also be limited to using it on smooth pavements and paths, and it’s only now that I realise how uneven many of the pavements are in this town.

Each outing in the wheelchair for the next few months will, I imagine, be a learning curve. But even finding out what it doesn’t manage, will be useful information to have. I also need to stop looking at the difference it will make through the eyes of a healthy, able bodied person. When I do, it makes me think I’m not using it enough. But actually, the difference it will make to my life, however small it might look to someone else, will be worthwhile, and will without a doubt improve my quality of life.

Thank you again everyone who made this possible. x

 

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Post Twenty. Thank You For Funding My Wheelchair!

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Claire, Stacey, Morag, Carola, Richard, Morag, Naomi, Kate, Gavin, Heather, Anthony, Nick, Paul, Jennifer, Lorna, Rebecca, Alan, Alison, Luca, Gillian, Kathleen, Ann, Bill, Gusia, Robert, Rhona, Seonaidh, Viv, Ian, Caroline, Ann, Gary, Morag, Robert, James, Jessica, Colin, Lorraine, Dot, Natasha, Christine, Kelly, Tony, Jennifer, Kathy, Clare, Kimberly, Angela, Phil, Richard, Clara, Agnieszka, Claire, Peter, Vikki, Sandy, Abigail, Emma and Anonymous Donors x 16.

Thank you so much everyone who helped me raise the money for my soon-to-be electric wheelchair. I’m completely overwhelmed by the generosity, support and encouragement I have received over the last few weeks. It’s been a really incredible experience.

Amazingly, I met my initial target of £2795 on day 12 of my campaign! It was so quick that I couldn’t even withdraw any of the funds yet!

When I set my target of £2795, I had been planning on covering the costs of the JustGiving fees (roughly 6.5% of the total amount raised) and the delivery fee for my wheelchair (£80) myself. However, some of my friends who had intended to make a donation, hadn’t been able to yet as they were waiting for payday. They asked me, after I had met my initial target, if they could contribute to these fees. So, taking this into consideration, I decided to increase my target to £3075. Which I then met on day 22! This means I now have enough not only to buy the wheelchair, a second battery, a travel bag/cover and three years of insurance, but it will also cover the delivery fee, and the fees deducted by JustGiving.

I have now withdrawn the funds and am just waiting for them to transfer to my bank account, which can take up to ten days. Then I’ll be able to contact Careco and order my new wheelchair!

Campaign began – Saturday 14th October 2017

I reached number 5 in the JustGiving Leaderboard! This means that only 4 other campaigns on JustGiving received more donations than mine in the previous 24 hours. – Sunday 15th October

Met first target £2795 –  Wednesday 25th October 2017

Met second target £3075 – Saturday 4th November 2017

I’m so grateful for every donation. This outpouring of support has been quite overwhelming, and it has meant so much more to me than simply being able to purchase the wheelchair.

As you may know from my previous post (Post Sixteen. Wheelchair Or Not?) I’ve been feeling very nervous about this wheelchair. While the sensible part of my brain tells me this will be good for me, the anxious side feels, well, anxious. It will, I imagine, take me some time to feel comfortable using in public spaces, such as Peebles High Street. While I get used to it, in terms of how it makes me feel, and how to operate it, I’ll be practising in less public places, and this will take as long as it takes!

I will also, as always, need to be careful about my overall use of energy. Having a wheelchair will not cure my ME. I will still only be able to go out, and use my wheelchair, when I feel well enough. This might mean only once a month, sometimes less, or sometimes more frequently. I do realise that it can be confusing for people to understand that I may not be able to undertake an activity that I managed to do a few days, or hours, or weeks previously.

Basically, my body has a pathological inability to produce sufficient energy on demand. Which means I have a limited amount of energy that I can use on a day to day basis. I have to pace myself and my activity, and be very careful to stay within my ‘energy envelope’, so to speak. Oh, and to make it even more interesting, my energy levels fluctuate, so I never know when I wake up how much energy I’ll have that day. If I over-exert myself, whether physical or mental exertion, and go outside my energy-envelope, that will cause a crash, which means my symptoms will worsen, and it can take, days, weeks, or months to recover. This worsening of symptoms after exertion is known as Post Exertional Malaise, which is the defining/cardinal symptom of ME. I really wish it had a better name though, ‘Malaise’ is so misleading, and really not very descriptive of the devastating destructive brutality of this symptom. I tend to refer to it as ‘payback’, because that’s what it feels like, like I’m being punished by my body for daring to live a little.

Now, if I were being very very sensible, I would only ever live within my energy-envelope, or my baseline, as it’s also sometimes known. In theory, if I stay below my baseline, I’ll be able to live with minimal symptoms. The problem is, life within my baseline is incredibly dull and boring, and it has done considerable damage to my mental health. I need more from life than what my limited envelope of energy allows.

There are also many things that use energy that are simply outwith my control, especially emotional stress. I can control the amount of physical activity I do, but I have no control over the things that I find upsetting, from the Tories persistent assault on the poor, vulnerable and disabled, to someone I love being in an accident, to my laptop dying. The resulting emotions, thought processing and communication required to sort these things out can also take me days, weeks or months to recover from. I’m also affected by sensory input; temperature, light, noise, smell and movement. No matter how well I control my environment at home, I cannot control the outside world.

So in a perfect world I would never go above my baseline. Even on my better days I’m meant to limit my activity/use of energy, and this is incredibly frustrating. It’s so difficult to suppress my natural instinct to be active, to go outside, to be sociable, and like so many people with ME, I tend to overdo it on my better days. This pattern, the overdoing it on the better days, then paying for it for days, weeks or months after, is known as ‘boom and bust’, and it’s what I should be avoiding. But like I said, this makes life so boring, too boring for me, and it’s that, along with the isolation that this life forces upon a person, that has damaged my mental health, and as a result I am now being treated for depression.

So anyway, this has been a really long way to explain why you won’t suddenly see me out and about every other day in my wheelchair, and also why you might see me only once every few weeks, maybe enjoying Dawyck Botanic Gardens, or Haylodge Park etc. For me, at this stage of my illness, I want to use the wheelchair to enjoy the places, mainly in nature, that have been inaccessible to me for the last couple of years. The wheelchair, will hopefully allow me to take in some of these places, every now and then, but not too often, without over exerting myself so much, that I’ll suffer for it afterwards. Also, please don’t be confused or alarmed if you see me walking! I can walk short distances, and by living right in the centre of town, this means I can walk, occasionally, to a nearby shop, or Costa, and to my weekly counselling appointments, which luckily, are very close to my home.

Something that I gained from this crowdfunding experience that I wasn’t expecting, was, it helped to take the edge off my fear of the wheelchair. I was so very moved, not just by the incredible generosity, but also the encouraging and supportive comments, that I actually began to feel excited. Everyone who donated has made this possible for me, and I feel like, it’s not just me anymore who is emotionally invested in this purchase, you are too, and I can’t wait to show you what you have paid for. One of the comments on my crowdfunding page said “I’ve been trying to find another little something to send you but instead I shall buy you a brake cable or a switch or something”. I love this! I love thinking that you can all decide which bit of the wheelchair you paid for. Obviously the brake cable is already spoken for, but there are four wheels, two batteries, the joystick, and all the others bits and pieces that hold it together and make it work, unfortunately some of you will be stuck with the insurance, which is kind of boring, but still necessary.

When I first set up my campaign, I never expected to reach my target, and I thought maybe only my mum and a handful of friends would donate. I’m so touched by every single person who made a donation. My family, my friends, my family’s friends, old colleagues, classmates from school and university and people I don’t even know. It’s so lovely that there are people who care enough to help out someone they’ve never met, unless we have met and I’m terrible and don’t remember! Although, being the daughter of two teachers from the local high school, and with a rather distinctive and rare surname, means that it’s possible some of these people know of me, or my parents, or my older sisters, and we do actually have some kind of connection. Or maybe they’re just dead nice people! Which of course, all of you are, whether you know me personally or not. The loveliest thing of all is knowing, and it took a friend to remind me of this, that “it’s proof, not that it was needed, of how much you are loved and cared about”. And this came at a much needed time.

I would also like to thank a few of our local media people.

Shortly after I set up my crowdfunding campaign I approached Kris Tatum at the Peeblesshire News. For me, it was more a matter of raising awareness of ME, which as I’ve said many times, is hugely misunderstood, (please read my last post for more info in regards to this Post Nineteen. Time For Unrest) than it was to get donations. But I was delighted to find that, after my story was published, I began to get donations from these lovely strangers I’ve spoken about. Shortly after my Peeblesshire News article was published I was contacted by Ally McGilvray at Radio Borders, who kindly publicised my campaign on air and on their website. Then, I was contacted by Sarah Frances at The Southern Reporter, who also very kindly featured my story.

You can read these here…

The Peeblesshire News

http://www.peeblesshirenews.com/news/15610306.Housebound_Peebles_resident__39_s_plea_to_get_her_life_back/

Radio Borders

https://planetradio.co.uk/borders/local/news/peebles-charity-worker-makes-plea-wheelchair-leaves-housebound-two-years/

The Southern Reporter

http://www.thesouthernreporter.co.uk/news/peebles-woman-smashes-wheelchair-fund-target-1-4601029

Thank you very much Kris, Ally and Sarah for helping to spread the word about ME, and of course for all the donations that were made as a result.

And lastly, thank you to JustGiving, who provided me with the platform that made this possible. Unbeknown to me when I set up my campaign, JustGiving help to spread awareness of the campaigns on their site. Sarah at The Southern Reporter was only made aware of my story when she received a press release from JustGiving! I find that quite remarkable, that someone at JustGiving made the effort to track down my local newspaper. Absolutely worth the fees they charge!

Now that I have managed to raise awareness of ME a little bit, I would very much like, if you would like to increase your awareness even further, to bring the film Unrest to your attention. Rather than going into it here, again I’ll direct you to my previous post, in which I kind of reviewed/shared my feelings after having watched it myself.

Post Nineteen. Time For Unrest.

If you like the sound of it, I’m delighted to share with you, that you (Peebles people) will be able to see it on the big screen at the Eastgate Theatre on Thursday 18th January at 7.30pm. Tickets are now available! If we can scrounge together enough people for a panel, including me, there might be a Q&A session afterwards! For non-Peebles people, you can find details of how/where to watch it, on the big screen or at home, in my previous post (Post Nineteen).

Thank you again everyone who supported me through my campaign. It means so much to me, and I’m forever grateful. I will update you all after the arrival of my fancy new wheelchair!

PS. If you would like a reminder of the wheelchair that you have funded, here you go…

(I had previously shared a video here but it no longer seems to be available, so here are a couple of photos.)

 

Post Eighteen. Crowdfunding My Wheelchair.

You may have read my previous posts about my indecision regarding buying a wheelchair…

Post Sixteen. Wheelchair Or Not?

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Well, I have decided to go for it and have given myself 30 days to raise the £2795 I need via JustGiving Crowdfunding.

This a huge, emotional and scary leap for me. But one of the things that helped me come to this decision, were the many kind and supportive comments and messages that I received in response to the above posts, it was really very encouraging and I thank you all very much for taking the time and energy to contact me. I still feel nervous about this, in fact I’m downright terrified. But I’m also a little bit excited, I very much hope that this decision will lead to a better quality of life.

If you would like to contribute to my wheelchair please follow the link to my crowdfunding page below. All contributions will be very much appreciated. And please feel free to share my crowdfunding page, if you wish to. Thank you so much, Phoebe.

www.justgiving.com/crowdfunding/phoebeselectricwheelchair

 

My future wheelchair!