Denial, fraud or dramatic...

New diagnosis and before diagnosis
1

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…

Jx

2

Wow Jules, we seem very similar apart from the fact I have only been ill since Feb whereas you have been ill much longer. I’m 44, think we are probably similar age too?

I was hit very suddenly and hard back in February and have not got back to work yet, nor am I diagnosed.

The part I hear in you that I want to appeal to is this part that is not using aids. It sounds like my walking may be a little worse, but i was a little upset at the suggetsion of buying a disability so that I can get round the shopping center without getting so exhausted I have to go to bed for the rest of the day.

My biggest breakthrough was I finally got referred for occupational therapy yesterday, and the lady was just brilliant.

She got me walking on elbow crutches and you would be amazed how supported and stable I feel, though I am not looking forward to going out myself on them - my handbag seems to get terribly tangled :slight_smile:

She has also arranged for me to get my house looked at to see if there are more things that can be done to help my “healing” (i havent given up that I may get some mobility back)

The point she made that excited me was that all the energy I expend on stuff I dont need to…it wastes energy that I could use for periods of structured excercise to make myself fitter and stronger…WOW

She talked openly about MS and said the diagnosis can take ages, and to get on with making life easier in the meantime which was really refreshing. Sometimes tho I feel that people really avoid saying the words “MS”, its like the elephant in the room, so I really like her honesty.

I have resisted returning to work as I have a middle management role and am not mentally sharp enough right now to function at my normal level. Whether thats due to the meds or the illness I simply don’t know, but I am loathe to return too soon and damage my professional reputation.

As for the DLA and stuff there are lots of threads on here if you search, if you don’t ask you don’t get!

Keep in touch, Love Gillian

3

Hiya jules

Yes I remember your posts.

I can relate so easily to your plight as I could of written it,apart from the work bit as they still wont have me back.

The trying to appear totally normal with others is my priority,and DLA forms that hubby got are still in their envelope.

I would definately get as much help as possible from access to work,but understand your DLA dilemma. ESA put me off as work are retiring me as totally unfit for work…which will cost them alot of money…and yet the ATOS medical found me fully fit for any work!!!

I have no advice and I dont know if it does mean we are in denial,but hang in there and I hope someone else can be more use to you.

Take care

Pip

4

Hi Jules,

Apart from all your possible PPMS; HSP; CFS/ME I’ve got another for you HS or Sticky Blood; see http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

It’s just as someone mentions migraines and it’s a simple blood test your GP can arrange for ASP Antibodies. If it is it can be easily controlled; worth a blood test.

George

5

Hiya all

I completely understand about feeling like a fraud to be claiming DLA, I also felt like a fraud even applying for it. I was awarded full rate mobility and care a couple of weeks ago. It still doesnt sit right in my head either, but it was awarded on the basis of test results (I am not diagnosed yet), the neurologists letter (sent to the GP with me copied in), on speaking to my GP and on the amount of medicines I take each day. So I finally figured that yes I am entitled to it as all I did was tell the complete truth (even about how some days I feel ok).

It still feels strange getting this money, but I have been living on Emp Support Allowance for the past 9 months so it is really helping us financially. ESA has been upped too, so instead of living on about £120 pw, I think I now get approx £250 pw. DLA was granted for a year as my condition “is changeable”.

I am certainly not able to return to work yet so I guess I will be claiming this for a while longer. I will hopefully get a firm diagnosis in October when I go back to the neurologist so I suppose I will then know what I am facing.

I hope everyone is feeling ok today xx

6

Jules i know exactly what you mean about struggling to walk .I am exactly the same ,to others i prob dont look like im struggling ,but i really am .

I feel like ive got some weights attached to my legs, and after a little walk they get weak and im shattered when i get in .Im also having to hold onto things and people when im out ,its so horrible isnt it .I get very painful shooting pains in them legs and they are so tingly.Then in the evening they burn so much i hate it .

Just to let you know your not on your own feeling like this ,

Sam xx

7

Hi Jules,

Apart from the work situation, I’m feeling exactly the same as you!

To everyone else I ‘look fine’…but I am REALLY STRUGGLING’ to hold it all together. I need help with nearly everything, most of my joints ache…my feet and ankles really hurt when I walk, when I have been sitting and I get up, I feel like an 80 year old as I am hobbling along. Sometimes, my legs feel heavy, othertimes they feel weak and like jelly. My head is all over the place, lightheaded and dizzy. My wrists ache and especially my thumbs hurt for some strange reason!

My speech has been affected…I sometimes struggle to find words, and the other day, I could just about string a sentence together, which was really embarressing as I was talking to my family around the dinner table, and all eyes were on me…I felt like such an idiot!

I have trouble sleeping sometimes too, as I have painful feet and restless legs. I honestly feel like I am falling apart. I am such a different person to what I was early last year.

The thing is, my GP is not very understanding, I’ve had MRI back in March, and I won’t be seeing the neuro till Nov. I was seeing an occupational therapist, who I’m sure doesn’t believe me…I think I’m going a bit paranoid with all this.

I have recently applied for DLA and been turned down, I am going to appeal, and I have been in touch with my local MP, who has apparently phoned the DWP and asked them to reconsider. He wants to know If It goes to appeal, and has asked me to contact him again,…he seems to be the only person interested!

Sorry for wafffling on,

Take care,

Wendyx

8

Thanks everyone for your replies… it really means a lot.

I know it’s not nice you feeling this horrible things… but at the same time it’s so nice to speak to people who know exactly what you mean!!! So thank you for taking the time to comment

Hope you are all feeling as well as can be

xxx