A lot of you have read some of my posts before… (5ys symptoms, no dx yet, but dx on the brink of PPMS or HSP, although have had a dx of CFS/ME in 2008, this year been told I have chronic migraine and spastic paraplegia)
I am beginning to struggle getting around and even at doing my job… I am a self employed photographer.
I struggle to walk, even though I can walk, and if anybody seen me walking wouldn’t know I was struggling, apart from the odd little limp and now strange leg movements moving outwards a bit. But nothing major to look at. My legs are in discomfort ALL the time, there is no break, but I carry on regardless. It may take me a moment to stand up sometimes, and compose my legs before walking… but I do it discreetly. I carry on walking regardless. If I get too severe or too dizzy, I’ll hold on to a wall, or rail or the person with me’s arm. I may have to sit and rest, for a bit, but still nothing deters me. Even beginning to feel ill from walking too long… I’ll still carry on… I pay for it as soon as I get home and collapse in a heap and have no energy to whatsoever to move.
At work, I have my own studio and do photo shoots from anything from babies, families, adults, commercial… I sit on the floor with the babies, or climb ladders with the adults, I run around the studio and change backgrounds, move lights and props… I do it in total discomfort… but don’t show it to my clients… I sometimes have to look away as my face contorts with the pain I’m feeling, or make an excuse to stop for a moment… I struggle though and can’t wait for them to leave… (On average a family is in my studio 30-45 mins) I then collapse on my chair and rest… sometimes until then next shoot arrives. (I now don’t book any more that 2 shoots in a day) Sometimes I’m hoping they don’t turn up… it’s wrong, without them I have no business.
I have fell behind on my editing, and obviously upsetting some customers as their images aren’t ready yet… I am struggling keeping on top of everything. The fatigue is a major factor. I have chronic migraine too so that doesn’t help with sitting infront of a monitor for a long time. I am not making enough money to pay anyone, I am barely making my rent and struggling financially too.
And after all this, I still don’t think of myself as disabled!! I just can’t! I really don’t think I am, because I CAN walk, I still work, I still do normal things like go to our local pub quiz, everyone in there wouldn’t dream there was anything wrong with me… if I was to say I am disabled to them they would just look at me and say where?? I’ve just been to my neices wedding, looked normal, the same as everyone else, even had a couple of dances. No one in there would have a clue! (although I have been paying for it ever since!!)
My family and friends have told me to apply for DLA and access to work. I have the DLA form but feel a total fraud filing it in… I have filled it in and reading it back it all sounds so dramatic, and I’m thinking thats not me!! If I was sent to a medical they read that then look at me, they’ll laugh me out of the door!!
I phoned access to work up and spoke to a lovely lady, she told me I definitely qualify for help in my job, and they are sending an assesor to my studio to see if they can help with equipment or even an assistant. But when they come and see me… I look fine!! I have gotten the knack of hiding discomfort and pain from other people.
Am I in denial?? Or am I really a fraud and shouldn’t be claiming these things?? I feel like both, but when I read back over this post and my DLA form, it DOES sound bad!! It’s all true, but I just can’t accept it!
Sorry this post has gone on a lot longer than I planned!! Any advice or words of wisdom…