Have had RRMS since 2009 (I am still told by my neurologist that it is a mild form) and had an attack last year which affected my mobility - this is the first hard hitting attack since I was diagnosed, and due to the fact that I had to wait for the other med to be out of my system before I could start on the new one. While I have managed to get back to normal physically, it has taken a year. I was so relieved to see the regular gym and focus on nutrition has really helped me.
But now I feel, just as I have come out of an endlessly dark tunnel physically, my head feels very anxious, tired, lost, angry - maybe all of those and some, and I feel I am taking it out on my husband!
I am very fortunate to have an amazingly mature 11 year old daughter and my âeverythingâ man by my side. But I feel like I am no longer any of those to them and have nothing left to offer them. I think I may have been as positive as them once though. I think I may also be pushing the husband away, often telling him to find someone else. The reality is that I may be protecting myself - I hate that he, and everybody else, saw me at my weakest, as well as having a similar or worse attack, the fear losing of my independence and becoming a permanent burden to him and losing the âsparkâ we have always had.
I sound very ungrateful and negative, but the attack last year really shook me up - I may have even been in denial for the last 10 years!
Where have I gone? Has anybody experienced the same ânon physical/psychologicalâ MS symptoms, or any tips?
Not sure I can say much useful but just wanted to say I know how you feel.
Iâm also about 10 years on from a diagnosis of RRMS. My mobility is pretty badly hit and I use a wheelchair most of the time when Iâm out and about but I still work long hours in a demanding job that I love.
When I first started using my wheelchair, two years ago, I found it really hard and recognise some of what you describe. I had some counselling (via Skype) using a company specialising in helping people with disabilities (spokzpeople.org.uk) and found it quite helpful. It helped me realise that I was reluctant to admit I might be / allow people close to me to see me as vulnerable. Working through that has made facing my low times easier. Personally, I cope by having a very small group of close friends on a message group. When Iâm struggling, I send a group message - sometimes a short message, sometimes more for an outpouring or rant - itâs easier than phoning or speaking face to face. They can answer if they can but, part of my ground rules with them, is that I know they are busy too and wonât always be around. One or two of the five are always around and it helps.The other thing I try to remember is that it isnât my responsibility to manage how people react to my disability. That includes my family! Iâm honest with them and they choose how to respond. Sometimes I like the reaction and other times I donât.
Feels like Iâve waffled a bit. Hope some of it helps
GT. I understand how you are feeling. I tried very hard to tell my wife to lead her âold normalâ life without having to deal with my issues. Her answer was âin sickness and in healthâ and we are stronger as a team. This is not to say that there are no times when she wishes things were different, and I also subscribe to this. Being there for someone when they are at their weakest is a pretty big deal, try to imagine how you might feel / react if the boot was on the other foot (figuratively speaking)
Fear of change and the unknown is normal too. Try not to stay angry and focus your valuable energy on being the best you can and dealing with each new normal. None of us want this crappy stuff but you might amaze yourself to find just how resilient and adaptable you can be. Enjoy the little victories and donât dwell too much on any bad bits (whilst learning about how your body behaves) put this knowledge into the bank and make use of it when other bad stuff might occur. I wish you and your family all the best. Mick
âWhere have I gone?â you ask. Youâve gone nowhere!
Youâve been dumped on from a great height with this m.s. - it has altered a lot of things but it hasnât obliterated you. All you can do is what most of us do and battle on as best we can - if you feel angry then feel angry - if youâre on a downer then go with it ( if it persists youâll need medical help.)
You may lose some independence at some point but that is along way down the line if at all. And thereâs little point in becoming pre-occupied with that - what will be will be.
As for the âamazingly mature 11 years oldâ and your âeverything husbandâ - sounds as if youâve put them on a pedestal and youâre looking up at them.
My guess is that your daughter is like hundreds of other 11 year olds and your husband no better no worse than most husbands.
I may be getting this wrong but you sound almost apologetic for having m.s. - well donât be - none of us asked for this accursed illness - and whilst most of us maybe not as good at some things as we used to be all we can do is make the best of a bad job and take each day at a time.
Ive been a player in this game for 22 years and it sure has taken its toll.
But underneath my catheter, wheelchair, hoist, ugly hospital bed etc I am still me.
You are still youâŚwith a difference.
This uninvited gate crasher barged it`s way into our lives and we have no choice but to accommodate it.
I rely heavily on hubby and carers to sort me outâŚI can do chuff all for myself and get fed up of having to wait till so and so or certain times arrives, before I get something done.
It annoys the hell out of me. I get fed up of saying please and thankyouâŚdont get me wrongâŚI feel good manners are importantâŚbut it`s so damned wearing to have to depend on others so much.
There are times when I try to do something myself, but end up making things worse and get told off for not asking! Grrr!
Youâre not the only one⌠if you find some self confidence and esteem going spare, I could take it off your hands! Being gnawed up by anxiety and low self esteem, and feeling like Iâm no good for anything and no use to anyone. Not a good way to be.