This is my first foray in this forum and I’m not quite sure what to say. I was diagnosed with MS four years ago and have been in denial ever since. I have been trying to carry on as normal but tiredness and pains in my joints are making this more difficult. I’m 45 but don’t want to live like a 60 year old (no offence). Also I’m not sure if some of the things I’m feeling are symptoms. Sorry this is so long. Any advice would be very welcome.
Welcome to the forum
I completely understand your need to carry on as normal, I try to do as much as possible that I used to do before my MS days. I still work 30 hours pw but, having said that, I have had to give in to the fatigue to a certain extent to allow me to carry on normally so that I don’t make myself more unwell. I have to have a little nap each afternoon to re-energise myself so that I can cook tea and have an enjoyable evening with my son. When I ignore the fatigue and push on, that is when I relapse.
I find that yoga helps with the aches and pains in my arms and legs. The first time I went to a yoga session I really didn’t feel like doing it as my legs were very painful but by the end of the session I realised that they didn’t hurt so much. Yoga is very gentle and a good yoga instructor will allow each member of the class to modify the postures to take account of their health and any limitations their body might have. If you look through the information on this website you will find some literature about the benefits of exercise. You will have to find what works for you, some find that yoga or pilates is best, some prefer to use the gym but it does also help with fatigue levels.
Do you have an MS nurse that you can talk things through with? It might help you to understand whether the things you are feeling at the moment are a worsening of existing symptoms or maybe caused by the heatwave we have experience lately or even maybe a relapse. Either way your nurse may be able to suggest ways to alleviate these symptoms, this may be ways to keep cool or trying different medication. If you don’t have a nurse, please contact your GP or neuro and ask to be put in touch with one. If you are unfortunate and there isn’t one in your area, then you could ask your neuro the above questions about your symptoms.
If you think it may be helpful, you could also ask for a referral for counselling to help you come to terms with your diagnosis. Many people on this forum have had counselling and have said that it helped them enormously. A diagnosis of MS is such a huge thing to deal with and it is a well known fact that MS can affect the part of our brain that controls emotions so it is no surprise that depression and anxiety can be very common amongst people with MS. There is no shame in having counselling or even anti-depressants if you feel they may help.
I know I have rabbited on a bit but, not knowing much about you or what you have already tried, it is difficult to know where to start. I hope that some of this information may help you. I think one of the best bits of advice I picked up on this forum in the early days was to listen to your body and try to work with the MS rather than against it. Find out what works for you, probably by trial and error at first, and trust what your body is telling you, for example, if you feel tired it is better to rest for a while than to push on and totally exhaust yourself.
Hope this helps
Tracey, thanks for getting back so soon. It’s nice to have people understand what I’m going through. Funnily enough I’ve just arranged to go to yoga with a friend next week. I’m lucky enough to have an MS nurse but don’t know when I should ring them. I’m still not sure whether some of the things I am feeling are a relapse as they pass after a couple of days, and the nurse can’t promise to get back to you for three days (it’s an answer phone), by which time I’m feeling better.
I really should look into counselling I’m interested to see how many people have suffered from depression. I’ve just come off a course of anti-depressants but never put the MS and depression together. I also think I owe it to my long-suffering husband and daughter that I go to counselling and talk it through with someone I don’t have to pretend in front of.
Again thank you Tracey, I now know what I’m feeling is quite normal, in these circumstances!
Tracey has given you what I think is the best bit of MS advice. “Try to work with the MS rather than against it”
If you feel like a rest it will be ultimately less frustrating to take a short nap than to push through the fatigue. I understand completely that you don’t want to feel like an old woman but honestly it’s no good ignoring MS because it will just bite you in the *ss. Due to circumstances I couldn’t alter I did far too much last Monday and I’m still suffering from it. It has made me feel double my 57 years and reinforced with a vengeance that I am much happier and healthier if I do small things and take good rests.
Much as you desire to carry on as before it just may not be possible.
I found counselling very helpful. I’d had MS for many years but it helped me to come to terms with becoming secondary progressive and the changes this caused.
Probably if you have a flare up of symptoms and then it gets better it sounds as if you are paying the price for pushing yourself too hard. I’m still learning the hard way on that one too and it is so difficult to stop and rest before I’m really fatigued because on a good day I want to make the most of the extra energy and get lots done. The problem is that I will probably suffer for 2 days afterwards whereas if I remember to have little rest periods after each little job I wouldn’t get so bad.
I still think it would be a good idea to have a catch up with your nurse though and talk through these things with her. If nothing else, it’s always good to keep her in the picture about how your health is from time to time. She can also make the referral for counselling - there would be no harm in trying it. There is no ‘normal’ way to deal with MS and all the emotions it brings; we all muddle along as best we can, there are lots of us on here every day supporting each other and lots of us experience similar feelings. Feel free to come on here and chat whenever you need support.
Have a good time at yoga, if nothing else it’s a bit of precious ‘me time’.