Hi, I’m new to the Forum, [but not to the MS society] i was diagnosed with RRMS in the early 80’s & joined MS Society [ my local branch did offer me a Welfare job once, they thought I would be good at it, as i am a very practical person] but I turned it down. I was diagnosed with SPMS in 1989. I’m now 68 & try to never give in to anything. has succeeded to a certain extent,[ but not totally], as had to retire in 1989 from my job in a school. however life still goes on, & husband & I have tried to make the most of whatever you can get. We had already caravanned with a truck & 5thwheeler so bought a new American 5thwheeler, holidayed in that for a few years, then he took early retirement 15 yrs ago, & we then [semi] full-timed in that for a bit, went to NZ [complete with w/chair] SPMS really set in during Covid, so sold 5thwheeler, & now have a caravan. I now use an electric w/chair fulltime. but have one with a rising seat - i can still reach all of the worktops, & cupboards, so I can still do all of the cooking! [husband cannot cook, & was not in the mood to die of starvation] cooking in caravan is a different kettle of fish, & have still to get to grips with that. Another problem to overcome, but I am sure there is an answer.
First of all, your attitude is spot on and i can only applaud that. Secondly the nugget here (me) has had RRMS since march 2006 and i can only admire the way you have not let MS stop you living life to the full (obviously within some restrictions).
It cheers me up and reminds me that there is always some level hope
Hi, I’m sorry for your diagnosis, but I always made the small joke that I did not live with MS - it had to live with me [& that is hard? - my poor husband of 47 years this October, could probably testify to that] I did find it hard, & financially it was no picnic, but when my SSP ran out i moved on to disability benefit, [now PIP, which actually carries on after retirement]. Luckily we had always taken out a mortgage on just 1 wage, so that still came in, until husband took early retirement, he then became my carer, [ pay is rubbish, but pays NI] we are lucky in that we are not for moving, so we have now lived in same house for nearly 40 yrs [chosen for its long driveway suitable for parking an HGV or two] In 1995 i got a Disabled Facilities grant to build a bedroom + wetroom. So we live in what is almost a downstairs flat, & the former bedrooms upstairs are storage, or visitors?. It was funny really, as I was given a Social Worker in 1996, we got on like a house on fire, my second job was in a home for Adults with Learning Difficulties - it turned out she had all my ‘clients’. That was surreal. I had spent all of my short working life with people with learning/physical difficulties, both children & adults - & I end up with a Social Worker? & that particular one? I have always known that a cure was a long way off,[if ever] & I always had/still have a lot of pain, but being of the opinion we only get one shot at this life, you have to try to enjoy it. I had a friend, who also has MS, but she was always chasing a cure, & seems to have forgotten to try to enjoy every bit of life as much as you can. Sadly in the end i could stand the woefulness, wailing & gnashing of teeth any more, & our friendship failed. I did the wailing & gnashing of teeth bit 47+ yrs ago, [lasted about 6 months] but it changed nothing, so changed tactics & went for life full on [well as much full on as i could, - not Ferrari style, more Volvo Estate car ] I also bought a Disability Rights Handbook which is an invaluable aid for everything regarding Benefits. I have not bought one recently, [it gets updated every couple of years] but i still refer to it. I believe its also online, useful tool in claiming benefits. I hope that your MS stays RRMS, & that you stay cheerful & as upbeat as you can, that old saying of ‘laugh & the world laughs with you, cry & you cry alone’ is very true & can equally apply to being miserable/bad tempered/etc, whatever the reason, people put up with it for so long, & then either stop calling, coming round etc.