I’m really struggling at the minute
I’m a teacher, age 33 and I’m about to go onto reduced hours in work. I’m so worried that the decrease in wages will leave me short. I’ll be ‘losing’ the equivalent of my mortgage payment each month, but I also absolutely cannot continue full time. I’m also finding this hard to accept as I very much feel like MS has total control over my life at the minute, whereas usually I remain positive. This is the first major change I’ve had to make since my diagnosis of RRMS around 4.5 years ago.
Also: I’ve always found fatigue a struggle, but I’m in the middle of an ‘episode’ now and just can’t seem to shake myself. I usually remain very positive but I’m struggling.
It’s affecting my relationship badly. Can we expect others to just understand, or is it okay to say it’s a problem if they don’t?
Hi there Amy…
The most important thing is your health - nothing else comes close. Working less hours is almost priceless.
Having said that bills need to be paid, I work 4 days per week - I would love to work 3 but I do like having spare cash for things. It is all about work/life balance, watching your budget etc.
Can you pick up more hours in future? If this is your first major relapse short term it will be hard, but you have to put yourself first. This will pass and you will feel better with RRMS.
Hopefully your partner is somewhat understanding and will help you get through this. I am 3 months into a relapse and I am getting used to numbness, energy levels etc…my partner thinks I pick & choose my moments to be unable to do things, but as long as I know the truth - that is what counts.
It will just take time - do not be hard on yourself and try stay positive
I really feel for you. I taught until I was 37, and then everything became impossible through a mixture of MS and other ailments which forced me into having an operation, wherepart of my skull base was removed. I went from full time to nothing, I couldn’t do the reduced timetable.
My advice is do what you can without burning yourself out. It’s not much I know, but only you know what you can do, so try to work around that if you can.
I wish I could say things were positive, but I have gone through a split with my wife, had to sell my home and move back close to family after many years struggling financially after it all fell apart. I remained positive for years despite more and more issues arising and more and more debt. The past 6 years have been one big pile on in that respect.
I was lucky that I sold my house at a profit so managed to clear off debt and a few years of comfortable living after. I wish I could give you some positive advice, but all can say is health is paramount for you.
Fingers crossed for you, because I know as a former teacher myself what this disease can do to a formerly happy life.
Have you spoken to your Union about what your best options are?
Sorry to hear that you are struggling. MS can be brutal on us and our families. Fatigue is a real monster, the fact that it varies and is not visible makes it particularly tough. I had to negotiate a specific MS fatigue vocabulary with my wife. If I use specific terms she knows I am not just tired. She might not know what it feels like but she will cut me some slack. The fact that you “absolutely cannot continue full time” shows that you are listening to your body and exercising as much control of your circumstances as you can.
Terms like “accept” or “fight” should not be binary. Whilst I don’t accept that MS rules my life, I do accept there are limitations and changes due to this condition. Ones range of options may be limited but we can usually decide the best way to manage things. I will stop wittering and wish you and your partner all the best.
Thank you all so much for your kind replies. It helps to not feel so alone in this.
I’m lucky that I’m generally well, I have permanent numbness but I’m learning to live with it. My first relapse was major and it came out of nowhere, no previous symptoms or concerns, and it lead to my diagnosis on the same day after being admitted to hospital. I know that because of this, I am still kinda in denial and finding it hard to accept (even though it’s almost been 5 years).
I hope that the reduced hours will help, as I’ve been seriously considering a career change even though teaching has always been my dream, and I don’t know what else I’d do.
Thank you again for your kind words and advice - I hope you all stay as well as you can. I’m so glad we have this forum, I’ve not been on here for a long time but I really needed this today. Thank you. Xxx
Have you looked to see what benefits you may be entitled to? I’m not sure where you stay, but perhaps PiP would be beneficial to claim? This isn’t means tested, so worth while seeing if you are eligible to claim for it.
The benefit message is good,but be prepared to fight for it x. Genuinely hope you can Fight through.
Hi Amy123, I real feel for you. I also work in education and although I am supported very well at work I have had to pull back. In pushing myself too hard I almost had a physical and nervous breakdown. Yes it is hard to make the financial adjustment but your health and well-being are the most important thing. Maybe as suggested there are some other benefits you can tap into. Was there not an option to work flexibly, working from home to do prep etc? This where you need support from occupational health if you have one and also the union. Fatigue, is something unless you experience it can be difficult to explain to others. At least on this forum you have plenty listeners that do. I’m new to this forum but hopefully as I am getting to see you will get lots of support and suggestions on how to cope. Take care, feel free to message……
We are all here to help each other get through this - sometimes a good listening ear and a chance to vent or let off steam is a great tonic
I only just told work after 9.5 years as I have been in good health all that time aside from occasional numbness in face etc. My feet have been at least partially numb since 2007.
I’m not gonna push myself in future - last night I had lower backache- which felt like a mild electric shock everytime I took a step. 10 hours in bed last night has set me up for my Sunday shift today, which thankfully is my shortest day…
I am posting here daily as I have a long commute there & back.
Morning Amy, I just thought I would check in to see how you are doing?
I got diagnosed nearly 2 years ago and I’m nearly 29 now. I’ve been a teacher but after the relapse and a newborn! I no longer wanted to work in that stress. So I thought, my MS right now isn’t really affecting me so I should make changes now before it does. I now work as a full time tutor in my own little business and honestly it’s easier! No marking, less stress (although unsociable hours) and more money. Think about it message me if you need any help! X
Thank you so much everybody for your kind replies. I really appreciate them.
I wasn’t feeling strong enough to reply at the time, but I did read them all and took your advice on board.
A little update:
I reduced my working hours & dropped a day a week. The effect this has had was massive and makes such a positive difference.
After giving it lots of thought, I think I will be looking to change my role at the end of this school year. I’m currently managing my role well, and enjoying it again, but a big part of me knows it’s too much and I’d rather leave while it’s still good. I want to leave on a positive.
I applied for PIP and was awarded the standard daily living amount. This goes a long way to making up for the loss of 4 days a month pay. I found the process very straightforward, the lady at my face to face assessment was lovely and really put me at ease.
I’m still finding things hard, but it’s nice to be able to share all the positives in the hope that it may lift other people too.
Thank you again for all of your words. Xx