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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.





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Is this the end?

Posted by Tim Molloy , 19 March 2014 · 697 views

I'm not sure if this is the beginning of the end or just a transition in the symptoms that will change into something else. The pain in my legs, mostly my left leg are getting worse and affecting my mobility. I wish my car was an automatic as it is, to say the least, painful operating the clutch. Other symptoms seem to have eased, fatigue has eased, to be replaced by poor sleep patterns. I had bad insomnia about twelve months ago, for a few months, but that went. Headaches have lessened and the mild ringing/hissing in my ear seems to have gone.

Must stay positive and take the highs of each day as a positive and work through the lows.

I am still working but certainly wish the drive was shorter with no traffic jams - doesn't everyone?

I applied for a Blue Badge two weeks ago, thinking it would take months to arrive and I would have it when I needed it. It arrived in six days! ironically in time for when I need it.

PIP forms arrived yesterday, I need to fill in carefully to get the maximum benefits, they take six months to process, so I may be dire by then and really be in need of assistance.

I am also, planning ahead, looking at what benefits I will get, in addition to PIP, when I have to give up work.

I am fortunate enough to have a good insurance policy that will lessen the blow when I inevitably have to give up work.

My MS nurse is recommending pain killers (minimisers?) to my doctor



Tim,
This sounds like me five years ago!  Do stay positive BUT do be realistic and look for solutions rather that 'giving up on things'  Regarding the car, I had the same problem and failed to realise just how bad it had got.  I did a local assessment using the 'Driveability' scheme.  This looks at what is required for your particular problems. In my case the solution was to get an automatic with left foot accelerator adaptation.  Having done this I am so glad I did it when I did and only then realised I should not have been struggling for so long.
With regard to PIP.......... Take the advice and sign up for the instructional guides on the Work & benefits website , These are really essential before submitting anything.   Do understand ALL aspects of the present benefits system. Again in my case when I was forced to give up I really had no idea of the finer points, such as the effect that ill health pensions and savings have on eligibility to benefits such as ESA.  
DO listen to your MS Nurse!  I'm a bloke who like the rest of our species don't like pills!  BUT getting a better understanding of what drugs suit you and learning how to vary things like pain killers and anti depresants is all part of the game.
Again I may have been in a similar position, that some of  my symptoms have in fact changed for the better, such as sleep patterns etc.  I feel that this is due to the changes I have been able to make in my self management and better understanding of the MS.  However as you know , it docent go away, and tends to bite you in the backside if you are not careful !!

Nick
Its not good is it Tim ,especially when your brain is telling you one
thing and your legs another !

great advice from Nick!
just make sure you get some advice when filling the forms in and
always when your describing your condition or when doing things , describe  it as though you were having your worst day

good luck and take care
Mal

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