I havent been on this site for a very long time. I’m so fed up with myself. I always feel that i’m trying to keep up, avoid life or make excuses to people. i seem to apologise, feel bad for doingsomething or not doing something. its like having a constant argument in my head. my life is changing and i’m still trying to stay in the same place. do you feel that life as you knew it is slowly sliping away, as if you are losing your grip? i feel that i should be one of those really positive people ‘ms wont beat me…etc’ but I feel it is and when im struggling to remain positve, i then beat myself up for being negative. I have such a feeling of isolation at times, due to not being able to involve myself, not wanting to and general sense of losing my touch with life…what is the answer??? God, its so frustrating!! if any of this makes any sense to anyone, and you have some tips, please let me know.
Hi Isabel There’s an awful lot of emotions going round in your head. They seem to be conflicting with one another. Can I ask whether you are diagnosed? It’s important to be kind to yourself and don’t beat yourself up. If possible talk to someone about how you’re feeling. Perhaps councelling might help. Ask your GP if its available. It’s great to be able to talk or vent to someone who doesn’t judge and its totally confidential. Are you on the best treatment for your symptoms to make them more manageable? Please don’t despair your emotions are totally normal. Hugs Min xx
i know exactly what you are going through but you need to rise above it.
do you have friends who are supportive?
spend more time with the people who make you feel good, cut off the ones who make you feel bad.
yes life as i knew it slipped away but i still have a life, a nice, gentle one - not that mad, hectic, frantic one!
take care hun, you probably arent used to putting yourself first but you need to start.
l know that feeling lsobel, you need to feel good about yourself to enable your body to cope with ms symptoms.
Vitamin d3/b12 is the first thing to check on.
Amitriptyline is a good all round med for making you feel better about yourself.
And for me the answer has been LDN. Not a cure - but something that boosts endorphins and just makes you fell more positive.
lt also helps with bladder control.
Can’t help with ‘the answer’, but I was nodding with recognition all the way through reading ‘the question’ so thank you at least for putting it so well and for making me and (I am sure) others feel as if we are not the only ones!
Just a thought - have you heard of mindfulness? It calms your thoughts and makes you realise that they are just thoughts. From all that you have mentioned I think it could be useful. Counselling could be another option but from my experience it takes longer to get off the ground. Good luck. xx
Oh dear Isabel, I know just how you feel, because I’m constantly doing the same. I sometimes wish I could eliminate the word ‘should’ from the dictionary (should do this/that, should be happier/more positive etc.)…
I think a lot of it comes down to expectations (mostly of ourselves, but sometimes from others). It’s very difficult (and frustrating) to accept that we have limitations and can’t do everything that we used to do. In some ways it’s a good thing in that we’ve kept our ‘fighting spirit’ but the downside is that we can be far too hard on ourselves.
I’m (slowly) learning to be kinder to myself by looking at things differently. When I’m too tired to do anything, instead of beating myself up and wondering if I’m being lazy, I try instead to remember that a lot of things will still be there when I’m feeling better (the housework isn’t going anywhere, lol), do something that I enjoy (reading, watching a film - good distractions) or even sometimes pretend that I’m having a well earned rest (even though I’m no longer working). I know it may sound strange, but it does help reduce the stress and frustration, which only make symptoms worse.
I also make a point of not fully committing myself to invitations etc.so I’m not constantly apologising for letting people down, and eventually people do understand that much as I’d love to do things with them, I’m not always able to, and they make allowances for that.
Local MS groups can be great places to meet people with similar issues and get things off your chest, as they know what you’re going through.
If you’re really struggling and think you may be getting depressed, why don’t you go and see your GP? I know anti-d’s aren’t for everyone, but they can help us get over a ‘blip’ and it’s far better to ask for help sooner (rather than later) and nip it in the bud. My MS nurse also arranged for specialist counselling for me, which was a great help so it may be worth giving him/her a call.
I don’t know if any of that was the answer you’re looking for, but as you can see, you’re definitely not alone.
I could have written this post myself Isabel!
You explain it very well. Its a battle i struggle with on a daily basis.
I don’t have the answer though!
You`ve had a lot of replies, which I hope has helped…sometimes when we feel lost and alone, just hearing from our friends here, can help us pick ourselves up a bit, eh?
I agree with when you say you feel to be slipping away from your forner self.
ll thats exactly what is happening to us all. But we have to find ways to accept we are still the same people, but with a twist! I know, it isnt as easy as that hun.
On your really bad days, tell yourself that your life is still a very important one. Why should you feel you need to keep apologising for your difficulties? These things didnt come to you by invitation. They gate crashed your life. Most people we meet are happy to help us, to open a door or offer us a seat on a crowded bus or train. The other other thoughtless and selfish people can go take a walk off a short pier, eh? They are the losers, the ones who have to go home with themselves and good luck to
em. Theyll get their comuppance someday, I`m sure of it!
Dig deep Isobel, to find your old spirit.it`s still there you know. On better days, give yourself a treat…whatever you can do and enjoy, do it! You ARE a very important person. believe in yourself and your opinions. They will be useful to someone else who is struggling too.
Keep talking to us here. We want to hear you`re doing okay again.
Just wondered, if you are finding home life difficult, as regards stairs, seating, your bed…I`ve had marvelous help from OTs. Have you had a home assessment from one?
Maybe it`s something to think about eh?