@beccygreeneyes

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beccygreeneyes

Lesion/fatigue question?

YOOOOO! Question for all you clever people! I had optic neuritis in may and since then my fatigue has been badddddd. It is still bad, noticed its worse when i socialise or so anything as its more work for the brain! I had a few more lesions on my brain can, 1 of which was HUGE! about 7 inches long ad 6 wide. What i want to know is...will my fatigue improve or even go wehn this legion shrinks or repairs? Or is it literally here for life? xxx

Stumbler

@Stumbler

Now, that could be considered a "how long is a bit of string" question. I don't know a definitive answer because no two people are the same. Have a read through this resource, which explains the problem and how to manage it:- http://www.mstrust.org.uk/information/publications/fatigue/

Gav

@Gav

Hey Beccy, try and think of your fatigue problem as a bit like a rolling wave on the sea. Some days the wave will be bigger, others it will be smaller, we just need to be ready to dampen down that wave when we can. From speaking with you, I know you've been at logger heads with your MS and it intrerfering with your life, but just try to manage it as best you can. You know what makes you feel worse, so just try and avoid those things :-) Sorry you're feeling rubbish, Gav

beccygreeneyes

@beccygreeneyes

Thanks guys! So sweet. Gav- u say you know what makes it worse? Yep i know that going out and socialising makes me worse as well as being out in public :( Hw am i meant to avoid that!!! lol x

Gav

@Gav

Its less the going out and socialising that makes your fatigue worse, thats like saying you being awake makes your fatigue worse, its what you do when you're out socialising. It may mean that you just need to sit down a bit more, I don't know, I am not you, I don't know what it is that you are doing.

Stumbler

@Stumbler

<a href='https://shift.ms/community/people/beccygreeneyes/' rel='nofollow'>@beccygreeneyes</a> , have a read through this analogy of fatigue and how to manage it :- http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ :)

beccygreeneyes

@beccygreeneyes

i found that anywhere with alot of people completely throws me...its too much activity for my brain to process. I went to a pub with my friends for a couple hours and it flawed my fatigue for almost 3 weeks :( tthanks for the link!

GoGo

@GoGo

I like your link <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> but my boyfriend suggested the analogy might work better with forks. So if you didn't want to do something you could just say - I don't give a fork ;)

Stumbler

@Stumbler

<a href='https://shift.ms/community/people/Jojo/' rel='nofollow'>@JoJo</a> , I can see your point, although it might not catch on now........... :)

smallbrowngirl

@smallbrowngirl

Okay. I’m a bit of a philosopher...hence my Buddhist outlook. But my theory may not go down too well to some, so apologies if I’ve hurt your feelings. beccygreeneyes, during these past 3 & half years, I’ve been through sheer hell. I must have had around 10-15 phases/relapses. And each time resulted in yet more legions. But at the same time, on occasions when I have been to seen my neurologist to go through the results of my MRI’s (Of which I’ve had about 12 – some of these was part of a research study at Nott’s uni, bcos they have one of the most powerful MRI’s in the country) he has commented on the fact there has been major improvement of my old legions. During these difficult years. I’ve been in a wheelchair, I completely lost my ability to speak and became housebound for months – I just looked very ill and was very fatigued. At this time, I was at my parents, bcos I was dependant on everyone for everything. I literally got up from bed, just to eat & shower etc.. I just think and realised that I needed to listen to my body and have patience. And I’ve come out the other end. My body needed sleep to heal. I’ve now moved back to my own house, where I live on my own. I go to the gym twice a week (not to run – but I will run again :-) I can now talk (not as quickly or as fluently as before) I drive (an automatic) car, I can shop on my own. I’m becoming so much more independent. And that’s bcos I have been healing. During that time, I never socialised, I lost 94% of my friends, bcos I can’t socialise like I used to. But that was a sacrifice I had to make, and I assure you, it was not ‘a walk in the park’ – I had to deal with both physical and mental pain. Now I’m taking each day as it comes and taking one step at a time. Maybe this was easier for me, bcos I had/have a great support system....my family...and I know I wouldn’t be here saying all this right now ...and now I hardly rest, I do hope my opinion has helped Adareshx

beccygreeneyes

@beccygreeneyes

Adaresh that has give me a light at the end of the tunnel. My fatigue started when my optic neuritis relapse occured in May. Since then it has never gone. The odd day is better than others but generally i am fatigued all the time and doing anything makes it worse unfortunately. Mayb your right- i need time to heal. My eye has still not recovered properley and am told by my neuro that i am in remission so not sure if that means my fatigue is meant to be better god knows. Fatigue seems like it is totally ruining my life. I hope that it improves. I am a newbie to the MS world so maybe i have to accept things more too x

smallbrowngirl

@smallbrowngirl

beccygreeneyes, I got optical neuritis only last year and I too am a (kinda) newbie when it comes to MS, bcos I was only diagnosed last year. And to be honest I still haven't accepted it....but I'm always learning. I went to my usual Buddhist centre today, 1st day back, they closed during the summer break. Today's session was about the mind. And the lecturer spoke about things I already know, I just needed to hear it and start believing again....I don’t want to preach, I’d rather practice than preach. But I am a firm believer that “It is your mind that creates this world” Remission, basically means recovery, give time for your body to recover and I do believe that your fatigue will improve x

beccygreeneyes

@beccygreeneyes

Oh gosh I hope so! I guess you have been through it so know how I'm feeling. Thanks I'm gna save this post and read it whenever I feel down! Really hope the fatigue does Get easier. I think I've been in remission 2/3 months so guess that's not long at all x

CBeebies

@CBeebies

Loving this thread. Very pertinent as fatigue has been my worst symptom since my last relapse end of Feb. It's affected my walking and strength. I need to do some meditation but am picking up on the exercise problem. Have reposted the 'spoons' link to facebook for all my friends to read! See my post on the thread about no meds for more details.

bubblesgalore

@bubblesgalore

<a href='https://shift.ms/community/people/smallbrowngirl/' rel='nofollow'>@smallbrowngirl</a> i totally agree with you re fatigue and rest. i have now stayed in bed every saturday for the last 6 weeks and just totally rest up. my family and friends have accepted that i do nothing at the weekends, and i believe this has been pivotal in enjoying my remission. i have endured so much like many others this year, but am pleased to bits that i am now on a 'roll' and enjoying every day with a smile. hugs and kisses to you <a href='https://shift.ms/community/people/beccygreeneyes/' rel='nofollow'>@beccygreeneyes</a>. rest has been my key.... xxxxx

beccygreeneyes

@beccygreeneyes

This is interesting....So fatigue can improve then? I am in remission as mentioned before so maybe over time my fatigue wont be so bad! Thats what im hoping anyway! Fingers crossed x

smallbrowngirl

@smallbrowngirl

btw, I went to an MS conference, which was held in Nottingham on Saturday. And they spoke a lot about fatigue. Just one thing I failed to mention, which is extremely important. Sorry if I sound too much like a leaflet....It's v important for us MSers to have a very good healthy eating lifestyle, to get plenty of sleep, try not to drink (alcohol) excessively, do try and exercise and drink plenty of water, all of which I do. And I firmly believe this has halped towards my fatigue too...

ophelia

@ophelia

<a href='https://shift.ms/community/people/smallbrowngirl/' rel='nofollow'>@smallbrowngirl</a> I find your outlook inspiring. I want to seek out a Buddhist centre near me. Thank you for your inspiring words xxx

smallbrowngirl

@smallbrowngirl

thanx Ophelia...it hasnt been easy...but I've tried so hard to remain positive. And to be honest, I have lost so much, I've literally lost the old me and inside I'm not happy....and thats where Buddhism really helps, it helps me find peace, it's certainly not for everyone. But I truly believe its philiosophy. Nothing external is going to make you happy...only searching within will...so I'm begining to Meditate more, as hard as this is sometimes bcos my anxiety :-S

janep

@janep

I really struggled with fatigue after I was diagnosed (back in 2007) and really agree with <a href='https://shift.ms/community/people/Gav/' rel='nofollow'>@Gav</a>, I think a lot of it was caused by me fighting my MS tooth and nail. I got into a really unhealthy cycle whereby I'd do as much as I could when I had energy and then crash out, leaving me feeling really lethargic and tired. I was adamant that I shouldn't have to change anything (and god forbid have to accept that I actually had MS!) so was up and down like a yo-yo and starting to avoid going out with friends in case I felt too tired once I was there- I became my own self-fulfilling prophecy! Once I managed to calm down a bit and learn to pace myself a bit more logically, the fatigue eased off and now it is rarely a problem. Getting fitter and exercising regularly really helps for me. It still pops up now and then, and is definitely linked to relapses for me, but I'm better at managing my energy levels and not going overboard! So yes, fatigue CAN go away and fingers crossed it will ease off for you soon but listen to your body and don't fight yourself xx

smallbrowngirl

@smallbrowngirl

I totally agree with u, janey & <a href='https://shift.ms/community/people/Gav/' rel='nofollow'>@Gav</a>, as odd as it seems, I feel more tired if I sit on my ass, doing nought!!

janep

@janep

<a href='https://shift.ms/community/people/smallbrowngirl/' rel='nofollow'>@smallbrowngirl</a> - weird isn't it! I turn into a grumpy lethargic lump!

smallbrowngirl

@smallbrowngirl

lol :-)

beccygreeneyes

@beccygreeneyes

Thanks so much guys. And there I was thinkin that fatigue is for life!! Thanks the lord that is not the case. I don't exercise but I know that has gotta change. Ds some in the garden earlier which was nice. I am so glad to here that things do improve! Pheww. Like I said I am in remission so hopefully my body carries on hEaling itself!! X