Positivity

I believe you can turn around negatives in your life and make positive things happen, Ive always believed this and so I have been looking at how I can make positives in my life despite my recent relapse and associated struggles. The first thing that has struck me about having such reduced mobility is how surprisingly, despite living in a country with good transport networks and modern approaches to making transport and facilities accessible for all, just how difficult it can be for a disabled person to reach a destination easily and be able to find facilities that are accessible. With my hobby of photography I am already encountering difficulties holding my camera and the energy to take more than a few shots, made worse with bursitis, I thought there must be others who have the same or similar problems. There is no local group for disabled photographers, so I have started a group to enabled disabled photographers on facebook and hopefully over time we can help each other, share tips, knowledge etc and build a local resource to help disabled people in the area. Members are already stepping up to help determine accessible photographic places to visit and we are looking to create  information files with tips, adaptions, locations, useful websites etc. I am currently looking at transport and planing to contact a local disability group to start a conversation regarding approaching transport companies about improving access for disabled people. So this is a huge positive step and something for me to concentrate on and hopefully together we can make a difference. I have been pleasantly surprised by so many lovely warm hearted people deciding to get involved with the new group and look forward to making some new friends through it too. Anyone wanting more info do search on facebook for Enabling photographers with disabilities  UK.

So this last few weeks has brought with it new stresses - I decided to apply for PIP as I genuinely struggle with many activities of daily living. I had read that it is not an easy process ( and I have applied before )and that many people get turned down despite having genuine difficulties and illnesses preventing them from living life as an able bodied person can.  So I have done my research. At the same time, by coincidence I am having my ESA reviewed so have also had to complete a long form and gather evidence to back up this claim.  Evidence is so important to both of these claims yet it is a nightmare to obtain at times - obtaining a copy of my healthcare records did not happen in
enough time because of GP surgery protocols and the fact that I only recently joined the practice -
they did not wish to give me access to records prior to the date that I joined, despite me quoting the latest legal requirements, it took 3 members of staff to work out how to proceed. So instead I ask my GP to write a supporting letter, she refused saying that GPs have been told by the DWP NOT to write evidence letters but to complete a form that will  be forwarded to them. The DWP dont employ GPs! I know last failed attempt I made the receptionist simply sent a patient summary which did not contain the necessary details. We are told by the DWP to obtain medical evidence when they are telling medical staff not to write it. Frustrating.  I do however have a supporting letter from my physiotherapist, who kindly helped me to go through the forms.

It is a worry that my ESA claim will get turned down and I will be expected to work even though I am barely managing self care and struggle to leave home without assistance. The DWP really make ill people jump through hoops and Ive read so many accounts of peoples benefits being stopped when they are barely managing to look after themselves with M.E and similar illnesses. Ironic that this has come at a time where I am at my worst and hence applying for pip. The evidence thing is a joke, we are taught by M.E specialist teams how to self manage and once taught we are left to our own devices, often with little support. As this illness can go on for many years this means we often don’t need to see health care professionals for years unless symptoms or severity changes. This makes the task of getting evidence very difficult. So the worry and stress of all this also negatively impacts M.E and symptoms in turn making my symptoms worse. It’s a frightening prospect knowing how often the DWP and their assessors mess things up and how people get essential benefits stopped or reduced incorrectly- and end up having to go to a tribunal which can take a year or longer to get sorted out. 70% are overturned- yes the courts eventually rule the dwp have cocked up in 70 % of cases going to tribunal - how shocking is that. I certainly don’t want to claim benefits - I want to work. I did not claim benefits for the first 9 years of having M.E. and since then I tried working  from home but ended up making myself even more ill to the point that I was housebound for pretty much 28 days a month. Even now I still look for some kind of work that I can do from home so that I can feel more fulfilled, earn for myself and to feel a more valued member of society. Even though I know I can’t possibly earn enough to live on and that whatever work I do will have a detrimental effect on my health. For now I’m trying to put it out of my mind.

 Celebrating the positives- lately I manage a lot less independently, needing help to make meals and to get out, and pretty much 5/6 days a week are spent resting at home as I’ve no choice. But when it comes to getting out for the couple of hours that I can manage once or twice a week - I’m in a wheelchair or on a scooter and I do try to create opportunities to do what I love as often as possible - usually involving photography - as the rest of the time life can get pretty dull sitting at home. So for 3 years I’ve been learning and practicing gig photography - often about once a month or every other
month, but in good spells two a month. I’ve been very lucky as I’m one of a couple of photographers who gets to photograph 18 bands in our local O 2 arena over the Christmas period- spread over 3
nights - I’ve only managed all 3 nights once out of 3 Christmas’s though.

 My ultimate aim was to eventually photograph my favourite 3 bands one day. Well I cheekily wrote to Hawkwind with my request and couldn’t believe my luck that I got the gig which was amazing, so I’ve down 2 to go. The next two are more difficult as they only allow photographers who get their work published- so I applied to several media outlets and got turned down las they all have numerous photographers. So I decided to turn my hand to writing reviews and wrote a review of the last gig I photographed and submitted it - yesterday it got published which is a great feeling. I wasn’t sure the review  was good enough, it was a struggle to write as  I can’t concentrate for long and have problems forgetting words etc. I also have to limit time spent on a computer to an hour  - 2 hours maximum.  So writing a review or article needs doing over days, not  in a hour like most people would do.  The website staff are happy for me to submit more reviews, interviews and photos, so I have a gig this week with two bands where I will attend in a wheelchair with help and take a few photos plus write a review  and in December I’m interviewing and photographing the Quireboys.

The other two bands
 I want to photograph are both touring soon - Doro Pesch in 3 weeks near me , so I’ve asked if I can have a photo pass if I can get my work published- and it’s a yes if I can get the editor to confirm publication- so now I’m waiting and hoping that they want a review and photos of Doro and Saxon who they are supporting. Fingers crossed - so close to one of my dreams happening.

My 3rd band is Def Leppard and it’s the same situation - I need confirmation that I can be published- so exciting - I’m hoping the website editor wants these too.

It may sound like a lot of work photographing a gig but for most you only get to photograph the first 3 songs so it’s not too bad. I’ve been doing it from my wheelchair lately and just standing or walking for minutes at a time then sitting again. It is tiring but the adrenaline seems to help push me through those few minutes. I’m lucky that I can cope with the noise and lights. Although in days after I like a lot of quiet 🙂

I’m also working on writing articles to get published in photography magazines - as I can’t do as much photography most of the time I can still try to get my work published. It could be an option for paid work from home if I can manage it, and there aren’t exactly a lot of options for paid work when I am pretty much stuck at home forced to rest 5/6 days a week.

I wanted to share this because I feel it’s important to still have goals and dreams in your life - yes we have to change our goals because our bodies misbehave, but if we adapt and dare to dream we can still make things happen. I know I tire myself out more by doing a gig each month but to me it’s worth a bit of extra pain and symptoms when no matter what I do when I go out for two hours I end up with worse symptoms anyway.

Here is a link to my first review https://www.gigsnortheast.co.uk/latest/review-big-foot-12-10-18-the-cluny-newcastle/

Relapse, independence, wheelchairs

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.

I cant believe its been a year since my last post. A few things have changed. Ive moved at the end of the year and now live alone for the first time in over 20 years, which can be daunting on days where the M.E is bad although Im closer to shops and transport which helps on my good days and closer to our beautiful coastline. I have been in a relationship for 10 months and Im very happy with my lovely partner. My stomach problems from last year are all resolved now - I had my gall bladder removed.

Positives this year - I finally managed to get to a bike rally which was fantastic with great company, Ive managed about 4  portrait photo-shoots this year (with help from my lovely partner) which has been lovely to get back into. Its been lovely to share doing things with my partner, doing new things together and sharing all sorts of experiences - luckily for me we share a few interests. I managed to get to the Beltane fire festival. Ive had a wonderful day trip to the Lake district with a good friend. I celebrated my 50th birthday this year in my favourite pub with lush friends and a fab band playing.

My health has been quite up and down, Ive managed to get out and about more this year than last, which has been heaven, but still paid for it afterwards. I feel lucky that Ive got out to see bands regularly too. There have been times where I dared to think I might be recovering as I was actually managing to get out about 3/4 times a week,  but still felt very fatigued and was in pain most days - I still needed 3 or 4 full days of rest every week, but its the closest Ive come to living a near normal life in 11 years.  Although at present I am struggling again. Back to being exhausted from washing in the shower and needing to sit a while before drying myself, back to struggling to dry my hair, and evening finding typing on my laptop or my phone tiring. Ive been here before, its feeling like a major crash and Im finding it hard to adjust back to doing literally nothing - nobody wants to sit around doing nothing all day. But Im trying to keep my mind occupied, trying to think positive and hope this wont last long, even though Im terrified that I could be this way for months again.
My plan is to eat super healthy. lots of healthy fruit, veg and protien, avoiding processed foods, gluten, dairy and sugar or anything that could exacerbate this crash/relapse. Take all my supplements and rest lots. Listen to my body for a change.
It may not just be down to M.E this time as my Thyroid levels have been swinging all over the place resulting in Thyroxine dose altered twice. Most of my worsenning symptoms can probably be attributed to the Thyroid problems, but some I can tell the difference and are definately from M.E.
My mind is not working properly at all, Im more forgetful than ever, struggling to think properly and find the right words, Im getting confused or muddled at times and have also been tearful for next to no reason at all. ( Im not depressed - Ive a lot to be grateful for and appreciate a lot in my life, but my brain/mind just isnt working properly and that in itself can be distressing). Plus Ive had some bug causing sinus and throat inflammation with flu like symptoms - not much different to the M.E symptoms but its been a raging sore throat some days, it seems to be clearing up slowly on its own, but minor illnesses often put me back to square one. Frustrating when its summer, beautiful outside and lots of fun activities and event going on that I want to get to.

Not getting out when you live alone is a whole new circumstance, I can just about manage to get ready but Im so exhausted by the time Im ready that I cant walk more than a few steps at a time sometimes. I darent go out alone when like this. A wheelchair could be great but I cant self propel - no energy and have nobody to push me anywhere most days and really really dont want to have to rely on someone to push me anywhere, or put anyone out. An electric wheelchair is out of the question as I cant pay for one. So, Im stuck at home, back to the option of ordering food online despite it costing about twice the price of my local shops. Back to a life spent communicating on the internet until my body is ready to let me do more again. Fingers crossed this is a short crash/relapse as Ive worked so hard on trying to build my stamina and fitness levels just to get out.

And so my invisible illnesses are seriously messing with my life right now. Life has pretty much stopped this last week or so. The difference being this time I have a lovely partner who has kindly driven me to the beach and to an outdoor theatre production. Its kind of hard letting a new partner see you at your worst and learning to negotiate a way forward that doesnt impede his enjoyment or put pressure on him. I keep making the mistake of pushing myself too far so that we can do things together - Im like a kid in a sweetshop, excited that I can share doing things with someone I love. But really he has been amazing, supporting me through a few life changes, an operation, putting up with my craziness :) and sharing so many life experiences together. I feel very lucky to have him in my life.

Lets see how the next week goes healthwise, fingers crossed I will be back to being able to get out again. Blood tests for Thyroid levels and a GP review coming soon.