Hi all,only my second post. Feeling totally dissolusioned today, OH has gone out and getting on with life, while I’m stuck in the house unable to move too far and having to recharge ready for work again tomorrow (no quality of life, just work and rest and work again). This condition is catching me up and there seems no way of slowing it down and I’m not coping very well, everything seems (and is) such a struggle. Don’t feel physio is doing any good, Baclofen only works for a short time an life is tough and there doesn’t seem to be any upside. Sorry for the rant, having a bad time. Any support would be helpful as this is reaally getting to me.
try and not let it get to you could you maybe cut down on work, also I find if i do something i build in a rest after it which recharges batteries to do something else example started ironing now sitting down will do another little bit and then sit down again, if not legs give up and i cant do anything, could you not have gone out with hubby and maybe driven somewhere, today i went to the art gallery with hubby didn’t see it all but can go back then drove to a local cafe and had some lovely coffee and a scone, again pacing myself.
PS have your rant we know how you are feeling .some times when i have a rant i feel better for it, so rant away
Hi Linda.
Sorry to hear how low you are feeling just now.
I`m a bit of an old timer at this mallarky, but in my very early days after early retirement, if my hubby went out and i was alone, I would get very panicky and quite morbid and frightened. I imagined something awful could happen to me. Actually it did, when i fell.
Now, do you think it is time to think about reducing your hours at work? Afterall, all work and rest is no fun…for anyone, eh?
Have a think and talk about it when your OH returns, eh?
Have you got any benefits sorted…like DLA?
You can get it whilst working.
luv Pollx
Have you asked for any adjustments at work that could make life a bit easier for you? Sometimes little things like having a parking space nearer to the building or having a desk nearer to the toilets or nearer/further away from the radiator (depending on whether heat makes you better or worse) can make all the difference to your fatigue.
Also rethink the chores at home to make life easier and less tiring. I do my ironing sitting down these days, I buy ready made mash and choose meals that are easy to prepare and don’t need me to stand at the cooker for long periods especially on a work day. I also have a little sleep every day when I get in from work before I think of cooking tea.
As the others have said, cutting your hours down just a little can make a huge difference. I dropped 2 hours a week and it was a big help and didn’t make a huge difference to my income.
Tracey x
Hi Linda
Sorry you’re having a rough time of it. There’s no need to apologise at all, I’m sure we can all relate to what you’re feeling. As the others have said, thinking about how to help with practical stuff will help with things like energy levels. For example, my wife & I always cook a double portion of a meal and have the leftovers the next day, which halved the amount of cooking that needed to be done. And every now & then we’ll cook a big pot of something, and freeze the extra portions. Also, you say you’re unable to move too far - have you ever thought about using a wheelchair? If not, I know the idea of it can sound scary, but what I’ve found with all of the different aids I’ve started to use over the years is that I resist it for as long as possible, but then when I start using it I wish I’d started sooner, as it always makes life so much easier.
Another thing I recommend doing is every day or week, look back and think about the different things you’vve done that day or week. Then with each thing, ask yourself did it energise you or help you feel rested, or feel like it was good for you somehow, or if you felt like you were really being yourself. Or were the opposite things true - did it de-energise and drain you, did you feel like you weren’t really being your true self etc. Chances are, over time you’ll notice simnilar things come up each time. So for me, I know having some sort of contact with nature us really good for me. And I know that just watching mindless telly all evening will leave me feeling empty & dis-satisfied. So if I’m wondering what to do for the next hour, I know it’ll be far better for me to look at the clouds & birds flying past than it will just channel hopping.
I just want to add as well that things don’t always have to feel like this; I think how we cope with things can improve with time. Grieving this change in our lives is painful work, but I think it’s possible to come to a place where we can accept things more & start putting our lives back together again…
Dan
I agree with all the work stuff and I’m also wondering what dose of baclofen you are on? If it only works for a while, then maybe you should be spacing it out during the day? Why not call your MS nurse and see what he/she suggests?
Karen x
Hi everyone, thanks for your comments. Have been signed off work until 17 June and am getting various health issues addressed. Resting now and then will try and start dealing with things. On a very low dose of Baclofen so will have to look at increasing it with my neuro physio/doctor.Feeling slightly more positive today but cannot say how long that will last! Thank you. Linda