Well since my last blog my health has continued to decline due to M.E symptoms. The worst problem is my mobility, I can barely walk more than a few steps at times and even a few metres is exhausting. I reached a point were I would try walking to my local shops which are only 200 steps away, and I would get there but couldn't walk any further, sat on seats for ages, walked a few steps to the next seat, sat ages, walked to another seat, sat ages, (luckily lots of seats by the shops) walked a few steps and leaned on a wall for ages, walked few steps and no where to sit, struggled to stay standing, my coordination has gone haywire and my balance is poor, I stumbled and fell to the side but managed to stay on my feet. I had no choice other than to either sit on the path or try moving forward. It took me about 20 minutes to walk the remaining 50-60 steps to my home, in tears as my legs weren't working, I kept stumbling, was breathless, completely exhausted and in pain. Finally got in through my door but could not climb the stairs to get up to my flat, I sat on the bottom steps for about half an hour and had a few tears - What do you do when you live alone and can't get out on your own? What do you do when you try to go out for essential stuff like fresh food and you simply cant walk any further? There was nobody I could ask for help, no family help, partner 20 miles away at work, friends miles away and most likely working or busy.
I had already been to my doctors and explained how much I was struggling - I had to catch a taxi there and back even though they are located just a handful of streets away. I had explained on more than one occasion to my Dr's that my symptoms were worse and that I was struggling to bathe/shower, wash and dry hair some days, struggling to make myself meals or do housework, some days I could walk short distances whilst some days I could only walk around my home. I asked months ago o be re referred back to the M.E specialist team for help and support, but they wanted to test my Thyroid functioning first - I'm hypothyroid. I can understand why they needed to do this but Ive had M.E for 12 years and Hypothyroidism about 15 years, I know my body and know that these particular symptoms are my M.E. It turned out that my Thyroid levels were out of range, I was over medicated, so my dose was changed and I had to wait 2 months for the next blood test, which ended up showing under medicated - resulting in another two months of waiting, finally my bloods were in normal limits and I could be referred back to the team - its taken months, whilst I have had to just try to keep going - and this has come at a greater cost as I've deteriorated even further because I wasn't getting help and had no choice to push myself to do the necessary daily activities. I finally saw the physiotherapist in the M.E team two weeks ago and he said even the very short walks just to my local shop have made me worse as Ive ended up in a boom / bust cycle, he explained to me that even though the parameters are very small, its still a boom bust cycle as I need to have a stable level of activity that I can manage every day without my activity causing worsening symptoms. So during the last few months of trying my best to keep going, to retain my activity levels and stamina I have made myself worse resulting in this relapse.
So its back to square one, which I've been through many times over the years, but this feels worse as I've pretty much lost my independence with my mobility difficulties. I am now faced with the uphill struggle to attempt to rebuild some level of activity and stamina. Its frustrating when I've worked so hard this last year on slowly building activity levels and retaining stamina. The way Ive manged for years is pushing my limits once a week or fortnight/month to go out, with help, to do something I love because the alternative of not going out and seeing people or doing something I enjoy is unbearable to me. Unfortunately this going out once every so often is what causes the boom bust cycle, the only way to avoid this is to only do what you can manage each day without bringing on worsening symptoms. There is no way I can accept a life sat at home every day. So I stay at home pretty much most days, doing some very light exercises, resting as prescribed and try to get out with help from my partner, daughter or friends on days where I can walk a few steps.
I plan ahead, rest lots on days before and after going out. I may appear as if there is nothing wrong with me walking into a coffee shop or bar to meet friends, but those few steps are pretty much my limit and I HAVE to sit down - if I cant then I have to leave. I am usually out about 2-3 hours and this is incredibly tiring, just having a few conversations with friends can leave me feeling wiped out. I am usually in pain before the end of my trip and always in pain in the next 24-48 hours. I used to try taking photos of the bands playing in local pubs as one of my few opportunities to enjoy my hobby of photography, but now even that is limited as I end up completely exhausted within minutes of trying to move around to capture the right angles. The last couple of times I just ended up kneeling on the floor to take a few images but struggled to lift the camera for more than a few images, I've tried being in a wheelchair at the front and just standing for a minute or two at a time too, but again I cant keep my arm raised very long to take photos. On top of that I've ended up with Bursitis in my right arm recently so photography is off the menu now - the main thing that drives me, gives me purpose and pleasure - quite frustrating that its happening at the same time as a relapse but these things happen. However, I have thousands and thousands of images taken over the last decade that I can use to create composites etc, so I can at least do that - although I'm advised not to use my computer for more than 2 hours a day as this is also very taxing. The band images taken here were taken at the front of the venue in a wheelchair resting my arms on the barrier - no moving around, just standing for a minute or two at a time. I was experimenting with one of my creative techniques and I am going to try to write an article on using these techniques which I would love to get submitted to a photography magazine - watch this space - I'm determined to still be creative and productive somehow.
I now have access to a wheelchair but I am waiting for a wheelchair assessment from the local services - I need this so that I can have a wheelchair to use as long as I need it and I need the assessment to demonstrate to the local council my need for a blue badge so that if I can get out in friends cars they can park in disabled bays so that I am closer to where we need to be. I cannot self propel in a wheelchair, its simply too exhausting just pushing the wheels round 2 or 3 times - I wouldn't even get to the end of my street, so I have to rely on someone else to be available and to be willing to push me. So this presents other difficulties, its an awful feeling to have to rely on other people just to get out and the person around me most - my daughter really struggles to push me and navigate the incredibly uneven terrain just to our local shops and even my partner finds it hard work.
Until you actually need a wheelchair you really don't realise just how limited the wider world is, the restrictions and difficulties you might encounter. My eyes have really been opened. I have also been looking at what is possible on a motability scooter too as some places hire them out. For example, being my favourite season of autumn I would dearly love to get out into woodlands full of the wonderful colours of changing leaves, I would love to go to town on my own using a scooter to meet friends, and I need to register with a new dentist since moving - none of these things are as easy as you might think. I have not found a local dentist that is wheelchair accessible, not only are they not accessible but many require you to climb stairs within the premises. Now I can walk a few steps to get inside and climb a couple of steps up, but what happens to my wheelchair or scooter if used? I can't leave it outside or it could be stolen. So my search will continue to find an accessible dentist, but I find this disgraceful that disabled people have to hunt for accessible health care and possibly travel further meaning extra costs, or help required to reach the destination. As for getting to town, if on a scooter that can be folded down I can use the metro which is a 3 minute walk from my home. The problem is that use of a scooter within the stations is not allowed, so I would need to walk through the station pulling a very heavy folded up scooter - sadly the distance to the trains platform is further than I am advised to even attempt at present - I could get part way and not be able to walk any further - the stations in town are huge and would require more walking than I can do in a week at present. Now I totally understand why scooters are no longer allowed on metros but surely disabled people should be allowed to use them within the stations like motorised wheelchairs can. Just one of the surprising restrictions I've encountered. I could use a bus, which is more feasible for me, however my local bus only stops at one end of town, which is a starting point - then to navigate the accessibility of the places I want to go - that will be a learning experience - I wont go alone first time as Ive already found difficulties in streets near me where its hard to get up and down curbs. As for woodlands - Ive started researching and there aren't many accessible by wheelchairs or scooters, information is limited and they can be tricky for me to get to, so not an option for going alone. But I'm determined to still have a life so I will continue to research and plan ahead. Going out alone will be extremely limited even using a scooter, I tire so easily and quickly. So as you can read, just going out is a whole new adventure!
Another aspect of my declining ability to perform daily living tasks is that it has left me feeling somewhat vulnerable. Now I like to think of myself as a strong independent woman who can weather any storms than come my way, but in reality when you try to make yourself a nutritious meal and simply cannot do it, when you cant even dry yourself after a shower and just have to sit on the bath to catch your breath and find the energy to put on a dressing gown whilst still wet so you don't shiver with cold, when you get stuck outside and cant walk any further and have nobody near to help - well that can leave you feeling quite vulnerable. It can be scary when your body wont do what it should. Yes, you adapt and find new ways in time, but those moments can be very lonely moments. Now I'm lucky that I have a wonderful partner who is incredibly supportive and a lovely daughter, plus some great friends and between them I know I have support and love. But part of why I write this blog is to raise an awareness of what it is actually like to have M.E, the ups and downs of life - the challenges faced and how I can try to continue with a positive outlook. Imagine not having any support or loved ones and having M.E. It is an illness that changes lives but it is possible to have positivity still. As Ive said above, I am determined to still be creative and productive so do watch this space and see how.
Some positives and achievements from the last few months
I finally managed to get to a bike rally that I used to go to over 20 years ago, with help from friends. One friend took a wheelchair along for me so that I could go and I had a fantastic time with friends- a bucket list tick for me.
I actually got to take photos of Girlschool playing live, although was too ill to do a decent job.
I started entering my photographs into the NPS competitions again and was awarded 3 gold awards and one highly commended.
I won a macro photography competition with Digital splash/Wilkinson's cameras pic below
Ive got lots more I want to write about such as the application for PIP and a blue badge and something positive I'm working on but that can wait for my next blog.
