I know that everyone’s experience with MS is different, but I’m curious how others handle the constant challenges and life changes that come with the diagnosis.
Right now, I’m really struggling. I’m off work, trying to make sense of everything that’s happening. Work was just making things worse, I was ignoring my symptoms and just pushing through so I made the decision to take some time off to address every aspect of my life.
I’m slowly starting to understand my diagnosis, but after a month off, I’m still not ready to return to work. More health issues have come up that I need to figure out. Work keeps asking me to attend meetings with Management and Occupational Health. They seem supportive, but I still feel pressured.
I’m also having a hard time feeling heard when it comes to my healthcare. I don’t want to get too deep into it here, but after 6-7 years dealing with the NHS, I’ve lost a lot of faith. I’ve been telling them for years that something was wrong, but it was always dismissed as mental health issues, or I was just given different medications without my actual problems being addressed.
I’m also struggling to keep up with people in my life. Most people have heard of MS, but they don’t really understand how disabling or challenging it can be. The hardest part is the invisible symptoms like fatigue, brain fog, buzzing sensations and many more that people don’t see. I feel like people look at me and see a healthy 32 year old, but they don’t realize what I’m dealing with underneath.
With everything going on, I find myself mentally stuck, unable to focus on fixing things or pursuing my hobbies. I’m just getting through the days, going from one appointment to the next.
How do you deal with these situations and are you managing okay?
As you say, we’re all different. In my case, the focus and structure of work was a bit of a lifeline: if I had been wandering about at home like a lost soul I think I would have gone bonkers. I was probably neither use nor ornament at work - but it kept me anchored at a time when things felt in free-fall.
With so much going on, if you have a steady job there’s something to be said for hanging on to it at least until you get your bearings in a new world. It’s harder to get a new one, once you’ve got MS, apart from anything else. Even if you’re neither use nor ornament at work either for a while, at least it gives life some sense of normality as well as paying the bills and helping to protect your financial future. Apologies if I’m way off beam here - your job might not do that for you at all, I do recognise.
No worries, I understand that work can feel like a lifeline, and I also get that finding a new job would be much harder. My current job involves a lot of driving, and I was coming home in a lot of pain, which has led to other health issues being discovered. Adding MS on top of that has made it a really difficult time.
For me, taking time off has definitely helped both mentally and physically. I’m still okay to drive, but I’m looking to transition into a different role within the same company to preserve my health.
Hello @Bam3003
I think it’s difficult for people to comprehend disability or mentall illness, if they cannot visibility see it.
It’s good you have a considerate employer, who can make provision for Occupational Health, some intolerable employers would rather push you out than grant special dispensation for disability.
I can empathise with taking the hiatus from work, recently I was ill-health retired by my employer, after I had exhausted the full duration for statutory sick pay.
Now I have to assess how physically able am I to engage in voluntary or charity work, which may not be viable, if I move at a tortoise pace these days.
I know it’s a bit cliché, but I’ve always gone along with the mentality “I have MS, but MS does not have me”, to a point where multiple sclerosis starts to impact my ability to do the things I take for granted or use to do.
Best of health,
JP
Totally agree with this sentiment, that of you being in control, not your MS. Yes, you have to listen to it, and act on it, but you can still have meaning, job satisfaction in your life!
Hi @alison100 and @Bam3003, MS is quite challenging and best to accept it as medication isn’t available yet.
Staying full-time home gives loads of empty time… Structure in life and counting each task as Tiny Achievement assists mentally as being off work takes away all daily achievements and activities.
I follow Overcoming Multiple Sclerosis by George Jelenik. It takes awhile to get used to new lifestyle but I am taking control.
The book is great. Please check it out. You are young and would really benefit. Doing some exercise has really helped. I see a psychologist and I can’t believe how much it has helped dealing with old issues and new ones. I am 65 and walk with a stick or rollator. Use a mobility scooter to go to the pool. I can still drive. Get started taking care of yourself. Get the book and start over. I have had MS since 1999.
Regards Maree
I just try to take one day at a times. I mark the few things I’ve managed to do, rather than the multitude I haven’t managed.
Other than that I would love to know
