Hi my very own PPMS family I hope everyone is feeling at least a little brighter now the weather is looking better.
Hope you haven’t forgotten me! I have been reading your posts every day, not felt like I could contribute
Anything worthwhile.
I have been feeling like my life is MS this has taken over my very being! Since my diagnosis 4 months ago I’ve had appointment after appointment for medical assessments & tests.My mobility has decreased significantly since the attack at the end of Jan. I am scared of what the future holds for me,I know I can only do my best to have a good quality of life but the worry of fast deterioration will not go away.
I should have been back at work on Monday I knew I wasn’t fit enough deep down, it took the O.T and G.P to make me admit it, now I’m off work for a further 4 weeks I’m not sure I’m actually capable of carrying out my duties anymore,I can’t get my words out, keep mislaying things, forgetting what people have said & it takes me an age to understand things, this is without dealing with the pain,fatigue,blurred &double vision, balance,spasms and mobility problems and urgent peeing 12+times day. I am still undergoing trials with different drugs to deal with all the above and an increase in anti depressants. Family life is at its most stressful, everyone has a health problem at the moment, no one is cleaning,laundering or cooking except me. I’ve been at 3 different hospital outpatient clinics with 3 out of the 4 kids my boyfriend has been sent home cause he stresses me out moaning about how lazy my kids are when he does very little.
On a positive note I’m joining the local gym tomorrow for the spa facilities,I’ve nearly finished my PIP form, I’ve applied for a blue badge.I am getting out more this week. I know it can only get better.
Pauline your post really touched me as I can relate to how you’re feeling. You need to decide whether continuing to work is really possible. Retirement was very difficult for me in the beginning but it was decided nearly a year ago now after a meeting with my employer who was lovely and understanding and accommodating but realistic, I was a nurse.
It was the best thing looking back as I no longer have the constant guilt about letting them down and relying on others to cover for me. Life on benefits isn’t always easy but my quality of life has improved so much. Like you I’m struggling with loads of body and brain symptoms that frustrate me but now that I can plan my day according to how I feel I’m not as exhausted, but when fatigue does kick in I can rest when I need to.
You’re coping with a lot of change and four children, you need a medal not more stress. Be kind to yourself and do what really needs to be done and ignore those jobs that don’t desperately need doing right now. Once you’ve caught up with yourself you’ll probably find your symptoms ease a bit, fatigue and stress worsen them as you know, and the jobs will not seem as difficult.
When you’ve rested and looked at your job realistically make an appointment with your employer and discuss your abilities and lack thereof and between you see if they can accommodate you, if not then it’s not meant to be. In that case you’re meant to spend your healthy time with your kids. That’s what the benefit system is for. Good luck. And remember that your family here is always available.
Reading this brings back memories for me, as I tried desperately to carry on working, but in the end I had no alternative, not to “give in” but to let common sense rule.
I do appreciate what a hard decision it is, but with hindsight, for me, it was the best choice, there was no othe4 way to go.
Try not to stress cos that will only cause you more problem, but go with the flow, and what is meant, will happen, but dont forget, we are all herenif you need to get things off your chest.
Hi Pauline, I too found it very very hard to stop work. But I do agree with Pam and Cath…in the long term it’s for the best. If your body needs to rest and you fight it you will only make yourself worse. It can be hard to live on benefits but we are not the cheats…it is your right to receive help if you are too ill to work. Hope you manage to sort things out soon…making a decision will also help alleviate the stress a little. Nina x
I never wanted to give up work but glad I did because I had some great times between some bad times without the drain of work and now I am down to wheelchair and cant get out of bed without help. So in my case I am glad I did but at the time it was stressfull. Thinking of you X Don
I found it hard too… but once I’d done it I realised just how hard I had been pushing myself. Now I’m really glad I gave up when I did. The fatigue was killing me. Well done Pauline for gym, PIP application and blue badge!!! You’re doing well hon. Big Pat on the back (you wouldn’t want me on your back… I squash you!) Take care and keep us updated with how it’s going, Pat xx
Hi Pauline, i think giving up work will be a good things for you, you have enough to worry about with the kids without the stress of a job as well, i wasnt given any choice even before i got my posible DX of PPMS my company forced me to retire…but im glad they did in a way as im so tired now and can hardly walk some days (not good for a Train Conductor lol) all the best to you . xxx
Cath I hope your feeling more positive today x hugs from sunny Southport.
I will be having an occupational health assessment sometime soon, I think I’m more worried about my identity than having to rely on benefits if I do have to stop working, I don’t know who I am and my worth I’ve always been the mum and dad (breadwinner,supporter,nurse & the fat controller ) I feel I’m losing it all and haven’t the energy to take on a new identity.
The gym/spa is not accessible too many stairs, funny thing is I was there 2years ago on a 1off visit and had no problems. Today’s visit was a shocker the stairs have grown in number the pool and jacuzzi are lower in the ground with massive steel rails to get in and out of. The walk from the car was 20 miles long you get my picture I guess! now absolutely inaccessible for me. I will have to use. The council Pool no stairs, it is a lovely pool just a little further away.
I think youre incredible even to contemplate working with all the horrible symptoms you mention! And, having 4 children to look after is more than a full time job anyway! Hope the boyfriend wakes up to all youre trying to achieve and helps out. It sounds like youre doing far more than any one person can be expected to do, and if I was wearing a hat, Id take it off to you!
Hope you get the blue badge soon; its one of the best things you can have with impaired mobility. Make sure you fight back if its refused at first.