Hi this is my first ever experience of forums as reading about MS I thought would depress me. I have just spent over an hour reading now and thought get out there and see if anyone will reach out. I was told of my MS after 4 years of tests, questions and blank looks. The first thought when my hands went numb was carpool tunnel to which I hand one hand operated on to no avail. I call myself a MS fraud as I do not suffer with the obvious or what people associate with MS (wheelchairs and ramps etc). What I am now suffering with is fatigue and aches and pains. I am what could be described as a control freak or to put it kinder organised and reliable. But for the last few months have found myself not having the energy to get off the sofa and live. My husband is amazing and looks after me but I feel I’m living half a life in a fog of despair. I up until Nov was visiting the gym 2-3 times a week but after a day at work all I want to do is fake it until I can collapse at home. I am going to my MS nurse appointment tomorrow and could really do with taking back control. Has anyone got any ideas?
Hi, welsome to the site.
Most of the people I know with MS don’t use wheelchairs, so I don’t think you’re a fraud! Most of us can probably relate to the fatigue though. Would it be possible to reduce your hours at work? It would probably be good tohave a sit down and look at how you spend your time & energy, and see if there’s ways you can pace yourself.
It’s not surprising you’re feeling despair as well though. Coming to terms with MS is a big, emotional ything to have to deal with, adn that’s inevitably going to have a knock-on effect on your energy levels. I think it’s important to grieve the loss of our old lives, so don’t be surprised if you feel other things like anger & depression - it’s just a normal part of the grief process, and can pass with time. You may find it helpful to do something like journalling, to help you get out & process your feelings.
I also think it’s important that you try & find little things that nourish your soul somehow. For a while I kept a diary where every day I noted the things that energised me & that I enjoyed, and also the things that drained me and left me feeling empty. After time I noticed there’d be regular things that come up on both sides. This means I can now make better choices with my time. So I noticed that watching mindless telly all evening would leave me feeling empty. But engaging with nature somehow would always feel like it fed my soul. So if I’ve got a free evening, I know now not to just watch telly all the time, but go and gaze out the window at the clouds & birds flying, or listen to birdsong radio (that’s a website that just plays birdsong - it’s very soothing!)
Hope that helps
Dan
hi louisa
i can relate to the fatigue issue. i told my neuro that it was my worse symptom and he just nodded sadly.
as dan said, take a good look at your life and note what lifts you and what makes you feel low.
there were certain people who drained me, so i dumped them (that sounds horrible of me but they were the stress heads and stress is the worst thing for my ms)
there were also people who lifted my spirits and i totally treasure them more than ever.
like dan again, nature lifts my spirits. i took up painting and especially love looking at the sky.
its a totally different outlook on life to what i had before.
my occupational therapist taught me some fatigue management strategies: planning your day and making sure you dont plan to do too much. resting often.
i have also found mindfulness meditation to be helpful.
its a completely different life since ms but it IS LIFE!!!
carole x
Hi both that was really nice to open my iPad themorning of my appointment and read your messages. I like this forum stuff ha ha. I read them out loud to my husband and took on all your ideas. Your right about the stuck to the sofa in front of the tele thing it leaves you bored and brain dead. Tonight will be be a move to the window and see what’s out there. As for the new life approach I think it’s time to stop fighting it and jump of the diving board. I have to take this seriously now and stop trying to be a hero. Let’s see what sense I can get from today’s hospital visit. Thank you so much!! X
Hi, I am currently into 3 years of questions and blank looks. My main problem is spasticity in one leg which has steadily increased. 20 years ago carpel tunnel was mentioned to me as I used to wake up every morning with pins and needles in both hands and feet. They went away when I moved them and circulation restarted. I still get this periodically. MOYNA xxx
Hi, how did the appointment go? Hope it was useful.
I have said so many times, that I think accepting your diagnosis and then setting about seeing what help you can get…in the form of OT/physio/equipment whatever, is tons better than trying to fight against it. Use what precious energy you have in doing something you enjoy. Pace yourself activity wise and rest as much as you feel you need to.
luv Pollyxx
Hi LouisaJane,
Im just taking my super hero cape and pants off, have tried before and failed but this time I have to, my kids are suffering because i refuse to accept i need to slow down and then end up in a big depressed/brain fogged/aching heap. good luck honey x
LouisaJane,
l am an ‘oldie’ having had MS for 31 yrs. Still able to get around but need the support of a rollator. This is more to do with my osteo-arthritis in ‘good leg’. Never thought after all these years of MS - and no cure - l would be more disabled by hip/knee/ankle arthritis.
l rarely sit down - find it hard to get up if l am sat down for too long. l do exercise - l have an eliptical trainer/healthrider/ powerplate - don’t use them all everyday but do as much as possible because l find exercise actually helps fight fatigue. After a few minutes of work-out l feel invigorated.
Also, l do take LDN - which stopped my fog straightaway - feel more alive and positive. l take a high dose Vitamin B12 and Vitamin d3 and magnesium. Someone on this site posted about MSSentials - its an American ms website that make a vitamin/mineral supplement that is supposed to be everything we need without having loads of different pots of pills. l decided to try it - so l am waiting for it to arrive.
Ask your GP about B12 injections - just google vitamin b12 deficiency ms - for more info. And the same for Vitamin d3 deficiency ms.
lts all we can do is keep ourselves as fit as possible. Keep weight down and keep moving.
Happy New Year to you
Hi well today’s appointment was the best I’ve had. The nurse listened and actually suggested things to do as well as drugs (can’t remember what ones, they are for energising to fight the fatigue) after a little cry about my old routine which was go go go, I then started thinking about the new me which will have to involve using the energy when I have it, staying fit with lesser hardcore gym classes and generally looking after me. So tomorrow at work I’m going to have what is known as a lunch break. I also will see how no I’m going home on time will go down. After joining this forum in the last 24 hours it has really helped me to accept this so think you all! Xx
Hiya - I I soooooo know what you mean when you say you feel like a fraud! I have spent 15 yrs pretending it’s not happening to me and not asking for help, because I felt so guilty that there are people out there with MS who are REALLY ill, not just manky like me.
Good grief, I’m such a basket case!
Anyway, I’ve decided to take control, and have joined the MS Society today. Have posted a new thread asking if anyone know what I should do since nothing forthcoming from my GP.
Hi, up until yesterday I felt alone with this weirdness that is happening to my body. I joined this forum and had a really good chat with the ms nurse and am now striving to listen to my body. I am as the nurse says going to start looking after myself and use my energy for things that make me happy rather than sprinting around the house with the Hoover. I’m going to book up regular days off work and find somewhere I can get pampered, massages, facials nails just some me time. I’m going to take my lunch breaks and see where it gets me. It is hard to say no to things but the people who don’t take offence are the ones I need to surround myself with. So here’s to finding my own medical and emotional support as up to now it’s not been forthcoming.