How long before I have to admit defeat and just accept these damn pains/numbness/stiffnes in my feet and legs are just another symptom of this damn desease and learn to live with it. Its almost like this thing tests us with different things, sometimes small problems sometimes big problems, just to see what we can and cant cope with and just how far it can push us. Well Im on the verge of admiting damn defeat. Sorry to moan guys but the pain is becoming too much and I dontseem to be getting anywhere with any treatment. Despite a cocktail of tests and retests. And to top it all Old Nora came knocking to deliver my share of her Virus which has knocked the stuffing out of me. Its almost 1.30 am and cant sleep. Would be nice if someone could sing me a lulaby, it sometimes works.
am going to try to sum my thoughts-if they make sense to you then use as u wish,if not then just ignore!
i dont see this as a fight against ms. the msfightsback camaign last year sent out all the wrong messages for me. a fight indicates there will be a winner. it indicates that u can ‘beat’ ms. i have been diagnosed 8 years now and in the begining i felt that it was a battle i was going to win. as time goes on i realised ms is much stronger than my weak physical body-my bladder is 80% ok and eyesight 100% but otherwise EVERYTHING has been affected. so i refer to it as my ms. it has joined me-albeit an unwanted visitor.
we get through one day at a time-an old cliche i know but its true. the ‘fight’ is lost by definition of diagnosis as i see it. so i only use my precious energy to do what i want to as the fighting is such a waste of time. dont thing i have ‘given’ up! far from it! i am a single mum of 4,every day is lived to the full. different everyday depending on what my body is doing!
for example,today kids are out to school. eldest has taken the ashes out for me. daughter has brought in coal and 3rd has been to shop for milk and bread. (4th doesnt live with me). i am waiting for medication to kick in-approx an hour after i have taken it. mon is peristeen day so by time i shower and dress 2 hours will be passed…
does this make me angry? no cos it does wonders for my self esteem. then zzzzz time. kids will be back at 3pm and i will have a smile on my face and wondering what their tales of today will entail.
i am not pretending that life is perfect-cos its full of challenges just like everyone elses. but its perfect for me. i am alive and have got an abundance of love to give-what else matters?
if you want to talk further then pm me. just trying to give u another angle to view this game of life
i heard on radio its blue monday today-lets show ourselves it isnt
Hi Kimbo, Ellies reply is just so right. Like the rest of us, she has a diffcult life, but its full of love for her children and although her days can be fraught with difficulties, she finds her way through.
I agree with her, that trying to fight an enemy we have no chance of beating, is a waste of good mental and physical energy.
Instead I think it is better to accept this monster and to work with it whenever possible.
Ive lived with my problems every day, since I was 45 and im now 60. Ive never thought why me? because I know id never find an answer to that question.
Rather than admitting defeat, I sum each day up individually. Some are better than others. I occassionally have a duvet day, if I feel too tired to cope. I guess I am lucky in that I do have a good support system around me. But even with that, I still have to make the effort to do my part.
i hope you dont take my words as harsh, I`m just trying to help you look at things another way.
I daresay having Nasty Nora virus, has made you feel 10 times worse than usual.
It doesn`t help that no treatments have yet helped your MS symptoms, does it hun?
Hi and thanks. You guys really are special. Last night i was feeling extra low, the pain more than anything is just grinding me down and nothing seems to help. Any other symptoms have become part of me and I have learnt to tolerate them. I Had an Ultra Sound today and will be having another Nerve conduction/EMG on friday but dont see Neuro for any results untill May so nothing wont be done till then.
MS Nurse said all along that it is Neuropathic and she feels I would benefit from steroids, might give her a ring and see if she can have a chat with Neuro. It feels like the equivalent of a permanent Migrain/toothache but in my feet and legs if that makes sense. Its gradually got worse over the last eight months or so
I consider my self extremely lucky as I can still function, (of sorts) its just this damn pain and stiffness. which seems to increase through the day so by the evening it becomes more and more unbearable
Poll I dont take your words as harsh hun im very gratefull for your support and words of wisdom. I too have never said why me, because if it wasnt me it would be someone else and I wouldnt wish this on anyone.
Ellie sounds like you have a some wonderfull children, I am also a single mum though my kids are all grown up now and have given me 7 amazing grandkids and another due in March (cant wait) so im now enjoying being a single Nana.
Very gratefull to have the support of you guys, thanks so very much
Realising the MS is here to stay, just to go into remission, then poke it’s head up. Live for the moments it stays dormant! Personally it made me concentrate my energies away from what I was hoping to do in life, to those that I can still do in life (called adjusting the goal posts!) I am never going to run another marathon, am never going to run an Ironman (swim/cycle/run a long way in each), am never going to enter another 24hr endurance event, am never going to do another Fell Race or Cross Country, but can utilise my skills in this field organising events and involvement with others throughout the North West. Am at peace with this side, just exercising less and concentrating on what is still acheivable! Teh stresses of a normal day sometimes is enough.