Hi i was diagnosed with MS 6 months ago, I haven’t quite got my head around it yet, i’ve pretty much carried on as before, however I am struggling with weakness in my arms (lifting the kettle, brushing my teeth, drying my hair etc) and legs and i’m sooooo tired, it’s the sort of tired that doesn’t go when you get up and do something which is how i’ve managed in the past, i’m dizzy very unsteady on my feet, i don’t know how to separate which symptoms are MS and which are due to disc problems in my neck and back, MS Nurse and Physio have conflicting opinions.
I’ve been on DLA for years with an indefinite award, i’ve just received a letter saying it’s due to end and I now have to claim PIP, 40 pages !! i’m terrible at filling in forms, looking down at the page makes the dizziness worse and I never know what to say about myself, I could explain all day about my Husbands illness (Behcets Disease) and how it affects him etc but i’m just not good at talking about me.
I have joined the benefitsandwork site, I joined it when i had to go from Incapacity benefit to ESA its brilliant,it costs about £20 for the year but so worth it.
Feeling anxious under these circumstances is perfectly reasonable, but not very helpful.
From a blunt ex-techie boys perspective I suggest you try to break the large complex of problems into smaller more easily sorted issues.
The tasks that are wiping you out with weakness can be categorised and prioritised, then you can do some of the less critical stuff on alternate days. As for lifting the kettle, try less water, or a smaller kettle. Rearrange the location to reduce the amount you have to move it. I put mine in the sink under the tap to fill it without having to keep hold whilst filling.
The dizziness sounds horrible and may be related to MS or other problems, there are eye exercises to help with vertigo type issues. Try typing Vestibular exercises into Google.
As for the PIP application I too am waiting anxiously for the application form. From what I have read on this site we need to be helped with the form , may be see someone at CAB or seek online support. Lots of info available on this forum.
In my opinion fighting it makes sense, just be smart about which battles you take on and listen carefully to your body, if it says “stop” don’t feel defeated but learn the new threshold so that next time you can stop at 80% before your body forces you, that bit of control means that you are in charge again.
Getting your head round MS takes longer than 6 months. It’s an insidious disease. Partly because we none of us know how it will affect us in the future, all we can do is worry about it. Or rather, not worry about it, because the future is too unknown for everyone. And once you have truly grasped that fact, you’ll find you don’t have to worry about MS anymore; you’ll have ‘got your head round it’!
With regard to DLA to PIP. It’s a monstrous trial. And one that nobody can do without help. Not even those of us who are ‘good at’ benefits. We all need assistance.
And regardless of how you tackle the form, one of the most important things to do is gather together evidence to support your claim. This means letters from your neurologist, MS nurse, physiotherapist, OT, continence nurse, GP, reports from anyone you’ve seen with regard to your care and/or mobility. If you have a care plan with the local authority or your GP, include it. You an also include letters from Carers.
Lastly, photocopy everything you send. And post it recorded delivery. Plus, don’t miss any deadlines.
And with regard to evidence collection, for those of you who have yet to get their ‘invitation’ to claim PIP, start getting your evidence together now. Don’t wait till you get your form. Plus, read through the CAB information on PIP, so you have a headstart for when you have to make your claim.
Thank you for all the great advice !, I’ve spoken to my MS Nurse, i rang her for blood results as she thought I might have an infection, those results aren’t in yet but I mentioned the PIP claim and it just so happens that they have someone from CAB who helps people fill in forms, so she is going to pass on my name and number.
Is it common to have fluctuations in temperature ? I am using HRT patches so I don’t think it’s “Hot Flushes” due to menopause but I keep getting spells of feeling really hot or the opposite will happen where my hands and feet will be freezing cold.
My Neuro also says I have Claudication in my legs, does anyone else have this ? if so any advice how to help it please.
Sorry for all the questions and thank you all for your responses
I received my invitation to claim PIP, which I did, I then received a letter telling me I was going to be having an assessment at home, the day arrived and I was so anxious, BUT they didn’t arrive, when i called to find out why, i was told they had tried call me at 9.20am, not true ! the Assessor was off sick, , i was sat with my phone in front of me because I was waiting for a call from the gas engineer, who DID call me, if I had missed that appointment they would have cancelled my claim, rescheduled for the 25th April, I hope they turn up to this one.
I think people on an indefinate DLA award should not have to be assessed
Well yesterday i received my PIP notice, they decided even though i have been receiving the high rate of DLA for years that i am only entitled to the standard rate for the Daily living component, nothing for mobility, our car will have to be returned. It makes no sense to me, i cannot go anywhere unless i have someone with me at all times but they decided it did not need help with this, how can they decided that ? struggling to get my head round this, i was already feeling low now i’m completely lost …
It is time to rally the troops and fight. You know how you feel but friends , family and all health professionals in your team need to get involved.
I think the people targeted at saving the pennies will be concentrating on easy wins, so you need to be a difficult so and so and not make it easy for them. Make a fuss. When they hear the evidence and realise that it is easier to maintain the status quo rather than engage in a fight they WILL do the right thing.
The same information applies as it did above. Get some help, join benefits and work, gather evidence. And apply for reconsideration of the crappy decision they’ve made.
And don’t miss any deadlines, this means you have a month from the date of their decision letter, not from the date you received it.
My Neighbour who helps me a lot has offered to ring them tomorrow, the Assessor seemed to think that i can plan and follow a journey on my own, absolutely not !
why do they ask questions and write down different answers, I explained my Brother helps sort out the household budget and banking, if i need to buy something like i fridge or sofa he helps me budget for it and sorts out gas/electric supplier, insurance, these are things i used to do with ease.
In the report it says i did not look anxious and i engaged with him and made eye contact, omg ! i was in tears because i was so embarrassed at being asked such intimate questions about bladder/bowel issues, he was about the same age as my eldest son (30) and he had his face in the laptop that he was using, barely attempting to make eyes contact with me.
sorry for going on, i’m so upset, it’s taken me so long to write this i am now exhausted
I am useless at speaking up for myself, I don’t think I did a very good job at filling in the claim pack, i tried to get help but a woman from the CAB wanted me to travel on a Bus to see her, although she was only 15 minutes car drive away it would have meant using 2 buses taking well over an hour as i don’t drive, I can’t cope going out on my own for many reasons, it would have been so easy for her to come to my house but she wouldn’t, so now i don’t know who to ask