Hi all
hope everyone is happy and well. i had to come home from work early (well, about 20 minutes after arriving) due to extreme fatigue. i work as a secondary school teacher, and not had a day off with MS related illness since the start of term but feeling like a total loser as i said that i would never allow MS to dictate my life, or be defined through it.
has anyone else had a similar event, and if so how was work about it?
So sorry youâre having a bad time but I think you should give in to how youâre feeling. Iâve always found that itâs not much use trying to fight the fatigue, it can make it worse. Look after yourself for a while & hopefully youâll feel a bit better soon, you are definatley NOT a loser! xx
Rosina x
you shouldnt be so hard on yourself,when MS fatigue gets you theres not a lot you can do about it.you need to let your body rest,fighting it just makes you worse, the ms will always win too, its better to live alongside it rather than fight it.
my ms has never defined me,its just something that i happen to have,and have had it most of my life, being able to accept having it isnt easy,and it takes quite some time to accept it too,i am proud of myself for the way i handle it,too, so be kind to yourself.if you can and try and adjust to it in your own way.
J x
Hi fluffyollie ,
Sorry to hear you are not feeling too great. I know exactly how you feel. I am a Reception teacher and had to admit to my head of department last week that I wasnât coping with workload etc, doesnât help that also 3 months pregnant. It was the hardest thing I have had to doâŚadmit to the fact that M.S had beaten me-for a while- not forever!! It is hard to accept but as others have said, there is no point fighting it as it just ends up making you physically and mentally worse. I struggled for a while before finally giving in to the fatigueâŚI also felt that if I carried on working when feeling so awful that I couldnât cope mentally. Management (who have been absolute gits in the past-especially just after dx) have actually been quite supportive, I think they appreciated me being straight with them. It canât be easy to manage someone who has a condition such as MS (we know how difficult it is to live with, not knowing how you are going to be from day to day). At the moment I have been signed off for 2 weeks with extreme fatigue, I had a text today from manager to ask when iâm going in to discuss alternative arrangements (as i requested)- worrying about that now but it has to be done. Do you have any support from Access to work? I also have a support worker for 16hrs a week that was really helping befoer the pregnancyâŚmaybe worth looking into?
Emma
Sometimes you have to give in to the fatigue. The only couple of times I ignored it and kept pushing myself (very early on) I ended up in hospital with big relapses. Now I know that if I feel that bad, my body is telling me to slow down and I ignore it at my peril.
I work in admin at a high school and in the first year after dx I very often went home early due to fatigue. I was quite embarrassed about it at one point but I really couldnât manage full days as I had felt pressured to return to work too soon after a huge relapse. My then line manager wasnât very supportive and we eventually had a massive disagreement when she behaved very badly, reprimanding me in a public area. I issued an ultimatum to management and I now have a new line manager who even tells me to go home when she can see that I am not looking well! What a difference that makes ! There have even been times when the fatigue has been so bad that I canât physically get my legs over the bath and into the shower (I now have a bath board) so I have had to call in sick. My new line manager is very understanding about all of this and knows that I will always be at work if I am able to. I even worked through two disabling relapses last year when I could barely walk so she knows that if I can work, I will work.
I am sure your employers will realise the same is true of you. By the sounds of it, you donât take days off lightly. A senior member of staff at school actually told me that he has staff with higher absence rates than me with no underlying health condition so I mustnât worry about my attendance. Over the years, I feel I have proved my worth so no longer feel guilty about the odd day off here and there.
If it worries you that your employer may be thinking less of you, why not do the same as I did and arrange a meeting with the person in charge of HR at your school? Sometimes itâs good to âclear the airâ and explain exactly what is going on. Mine allayed my fears and told me that they were fairly sure my taking lots of half days was a temporary problem and if it became a real issue they would discuss things in full with me and âI was in the driving seatâ if I needed to reduce hours or make other changes permanently etc.
Tracey xx
hiya
why does ur username make me think of policeman from the bill?! there will be a connection somewhere i just cant work it out at the mo!
i am fairly disabled now but am hoping u will see where i am coming fromâŚ
i am single mum to 4 kids. used to work part time. was a car driver. volunteer for various things. blah blah-am just trying to build a picture here! now i have carers in, no job, no car⌠i was a psychiatric nurse for 10 years so i appreciate how important mental health is but it wasnt until 2 1/2 yrs ago i found myself putting all my theory into practise. in fact i feel grateful to be able to see it from the other side. grateful i hear u say?! i do mean that because the alternative for me was to ponder over what i have lost and become angry and bitter (with myself and others) who would benefit from that?!
i echo the others⌠do what u have to in order to get through each day. whether that be at work or at home. erase the word guilt from ur vocabulary! u r not wonderwoman-tho am guessing u would look grand in the costume!!!
i cant remember what is was like living without fatigue.
i know u are far from thinking about not working etc but its never too early to start thinking about coping mechanisms for long term use.
i hope that make some sort of sense for you, just offering another venue for u to explore.
ellie (who is still sat in her pjs plucking up energy to get to the loo and thats just the way it is today!)
Sorry didnât mean to post twice - the system crashed on me and threw me out. I didnât think it had posted at all and now I find itâs there twice
Dear all
I am so grateful for the advice and kind words that you have written, and have certainly taken them on board. i saw my gp today who is lovely, and she has been very concerned that i donât over do things, and has told me that i shouldnât give myself a hard time for feeling bad. My line manager has been great, and despite the tiredness which rendered me as âgame overâ last tuesday and which still affects me, i have felt better.
I really appreciate the support that this forum has given to me. massive hugs to all, especially elmo (tracey), chocorage (ellie), polar bear (jen), emya 1 (emma), mrs j and rosina. xxxxxx (1 each!)
Hi
I am a secondary teacher and I am in my office now trying to find the mental strenght to crack on but itâs really difficult. Having abit of a flare up at the moment and using crutches to get around which is exhausting in itself. Everyone would say to you donât worry about having time off - but we all do. I will say to colleagues whoare ill âwhy are you here todayâ and they reply âsame reason as you are!!â
None of us want to give in - I am top of the list for that, especially with fatigue as I always think people are judging me when I know deep down they really donât.
Teaching is an incredibly challenging job now adays - keep in touch - where do you teach? I iam in Doncaster
Helen
Hi Helen
Two words - GO HOME!
I always get tearful when I have to admit that I canât carry on. I donât know why but the guilt makes me tearful and down. I always feel better when Iâve had a good sleep though. I had to use a stick through my last two relapses just to cross a room and it is exhausting so I know how you feel. Please, please rest up and take care of yourself. School will cover your lessons and the students will be cared for.
Our HR bod in school told me that some staff have far worse absence records than mine and they donât have a chronic condition. They obviously donât have the guilt that I feel either.
Hope you feel better soon <<>>
Tracey xx
Helen,
l see you use crutches. l am not able to walk unaided - and find a rollator - Topro Olympic is now my best friend. lt has opened up whole new life for me. lt has a handy seat and a large carrier that hold so much. l use it around the house and garden. Take it in the car so l can get into shops/restaurants/library etc. ln the last 18months l have had a total knee and hip replacement and the rollator was so useful to get me up and about. l can move so much faster now with it. Now l am more upright and better balanced.
Also, l have another one upstairs - so l use my stairlift to get up there and its onto the other rollator to get to my bedroom. The Topro is just the right size to hold the laundry basket. Now l can get outside and hang the washing out with the safety of knowing l can just hold onto the handles for support. l cook and serve food with a tray on the seat. This xmas l managed to cook dinner for 12 guests.
Just to be able to get about with handbag/ phone /keys/ remote control for tele /books in the bag part and a tray with my lunch/coffee etc on the seat. And l can get to the loo in record time!
hi helen
in answer to your question i live and work in essex, and am back home again for the second day in as many weeks since we came back in january. i know exactly what you mean re judging, and i really hope theyâre not. the school i am at is an academy and i have had a really bad experience at one previously. i am coming to the end of my probationary period and whilst work have been good generally, the guilt of not being in coupled with feeling really bad with MS related symptoms is not doing me any favours.
hope all is well with you, fluffyollie x
I have had similar âepisodesâ as the MS nurse calls it.
I am assuming that as a teacher you work for your local EA which is part of local government.
I work for the government too (not saying which dept. though) and I have found my employer to be nothing but supportive and helpful. Just as long as they are made aware of the reasons behind absences etc. They even discount lost days as sickness absence if it is related to my MS, and it usually is.
HiâŚi am currently on my third day off work (i am a T.A. in a reception class) having had a extreme episode of fatigue on Monday at work where i eventually was unable to talk. I went back in to school this morning and got sent home again.
The most frustrating thing for me is the lack of understanding from colleagues because they think i am just a bit tired, and they are all tired! Which they are, everyone works hard there. I get comments like âenjoy putting your feet upâ. It makes me very cross and i ended up cryi g this morning because i do when i have bad fatigue and also because i donât like to be thought of as a lightweight.
Hi I work in a special needs department within an academy and I have had to go home once but have had numerous days off with fatigue and reactions to injections they are really good with me about this and the people I work with are really understanding (well at least to my face!!) I am a little confused by what fatigue is I get really tired and have zero energy some days but when I try to sleep I canât which then makes me more tired and upset sometimes I take sleeping tablets to help. And I get really scared cos I have only been dx for a year and have these things happen to me already so what have I to look forward to the further down the line I go!!! It really scares me
Hi Em3a,
I think the uncertainty can be scary. i had to learn to walk and talk again twice and was hospitalised for 6 weeks each timeâŚi thought i might stay like that. That was when i was 24 and 30âŚi am now 53 and have not experienced anything so severe since. I have been pretty lucky really. So, it isnât all doom and gloom. I can imagine it is upsetting not sleeping âŚi have nights like that too.
Fatigue is explained well on here. People with M.S. feel more than tiredâŚit is a debilitating exhaustion which can suddenly hit you from nowhere, making you feel like your whole body is heavy, almost flu like. My speech gets affected when i am like this and my balance is worse, cant think straight. But it is personal to each of us. For me, it is worse than when i couldnt waLk at all, because a lot of my symptoms are invisible. Have a look on this website, also google it, there is lots of information out there. How long have you been diagnosed?
Hope you sleep well tonight. X
So SorryâŚi didnât realise dx means diagnosis! I am 53, after all! Lol
Caroline x
Lol donât use that as an excuse 53 is not old. Some,times this site scares me! When I read about other people and maybe I do suffer from fatigue cos my body feels like how you explained but my head doesnât shut off and let me rest hence the sleeping pills however I had a great sleep last night. Your experience sound so horrible and scary but you came through it as I know I will the worst I have been was just before Christmas when my neck decided it would go into a spasm for the seventh time in the year but it would last for 6 weeks!! Great and itâs now deciding after been fine for about 4 weeks that it will just remind me itâs still there!!! So Iâm off to the docs on Monday for some more tablets. Oh the joys lol x
I havenât experienced my neck going into spasmâŚthat sounds particularly horrible, and very restricting. Try to stay positive, but also donât be martyr and do things to the detriment of your health. I have done that many times out of guilt and worry that people would think i am lazy and then make myself worse. Get yourself to docsâŚi may bd going myself on Monday!
I wonât be a martyr but isnât it horrible how other people can affect our lives when they donât have a clue!! But my new philosophy in life is just be honest and tell people cos itâs too short not too