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/