Just a quick question, I wanted people’s answers, thoughts and opinions to this two part question ………
Is disability inevitable?
If you think it is, does it change how you live and think now?
Although I don’t think background is relevant to my question, I am a healthy and active 47 year old with a full time active job and have an MS diagnosis of Highly Active RRMS. Diagnosed 3 years ago and was put straight onto Tysabri that has worked very well. Last MRI showed no new or active lesions and I am currently awaiting the results of my second MRI, which I am sure will be the same. I feel that I should do active things as much as possible in case I am not able to do it in the future. Others around me seem to have forgotten and I think see this as a dramatic attitude.
Thanks for your answers
Jx
PS. I should add that I am not without symptoms and difficulties, but you wouldn’t know to look at me
Those around you have breathed a sigh of relief at being able to take you out of the ‘problem’ category and put you in the ‘no problem’ category. That makes them feel much better. That’s nice for them, but it doesn’t really help you much. I don’t think you’re being dramatic, I think you’re being realistic. You have a chronic progressive neurological disorder and that’s not going away.
My own highly active RRMS has been stable on Tysabri for 15 years and long may its wonderful effects continue work to for me as for you. But neither you nor I knows what sinister damage is continuing to occur under the radar and what lies in store for us when our disease moves into a progressive phase and these wonderful drugs are no use anymore. So let’s seize the day. It’s a good philosophy whether you have MS or not.
I think if I was ever asked is disability inevitable? I would just say, the only certainty in life is death.
For me as a fellow RRMSer, disability has come about ever so gradually over last 20+ years of having this horrid disease, multiple sclerosis.
I am no longer taking any DMT whatsoever, so I intend to mitigate any further disability by having healthy nutrition, regular exercise and a positive outlook on life.
Best regards,
JP
I also don’t think I am being negative, just realistic. Seizing the day is what I would like to do, just not on my own. I will continue to think positively whilst also being realistic and stick to my guns on my thoughts. Your comments helped. Thank you again.
Being a long term PPMSer experience tells me disability is inevitable, so the “do what you can, while you can” approach has worked well for me.
Your situation is a little different though and shows the benefit of being on a highly effective DMT. I would say there is no point in putting off stuff you really fancy doing, but go at a pace that suits you.
The opinion of others isn’t terribly important in the scheme of things.
Hi J, hope this doesn’t sound like I’m being difficult but what do you mean by ‘active things’ and ‘as much as possible’?
In my case yes the diagnosis did change how I thought and lived. I retired early so that I could enjoy life before any disability started to restrict me. Can’t say that I then rushed off to do a lot but on the other hand, I now have some disability and I’m glad I didn’t waste years at work (I did enjoy work but it was nice to retire and, as the saying goes, ‘not many people reach their end years thinking ‘dam, I wish I had spent more time at work’).
Rather than rushing off and being highly active I just took life at a slower but enjoyable pace.
I suppose my views are: no I don’t think disability is inevitable for everyone with MS but if I had been diagnosed with highly active RRMS I would have thought that disability to some degree was inevitable. Having said that, I’ve no idea what the longer term outlook for those on Tsyabri is.
I was put on Avonex and I haven’t had any more lesions but , sorry to mention this, existing disability has got worse over the years. So, maybe plan for the worst and hope for the best?
Hi J, don’t know if you are still checking for replies but I was thinking further about your two questions and realised that in effect they touch on an important question about how best to live with MS.
The MS Trust has something on this - see link
I tend to follow the guidance and suggestions in Overcoming MS - see link
( I think I could benefit from revisiting all the above and reviewing my lifestyle- diet, exercise, relaxation/ meditation etc!)
One thing to avoid most definitely is getting stressed and anxious - do what you can to maintain a ‘calm’ immune system and don’t get any serious infections. I got bad Covid some 2-3 years ago and it really, really made my MS symptoms a lot worse for the best part of a year
I think generally speaking, I live with MS pretty well. My diet is on the good side, my lifestyles choices are maybe very slightly above average, other than disliking itself, I have a strong immune system. I don’t get ill really, no colds, flus or infections. I’ve had covid multiple times (I was a carer and now work in hospitality) and have been ok. I am also touching lots and lots of wood whilst I type this. I can’t really explain what I mean properly without a whole personal story, it was just that I feel I am missing out on doing stuff because no one around me wants to do it and I guess it’s making me feel a sense of urgency. Almost like life and experiences are passing me by. If I try to explain to those around me, they don’t understand and/or think I am being dramatic/negative. It’s not that I worry about future disability, more that if/when I get there, I will look back and be disappointed that I didn’t do that walk around High Tor, or the coastal walk around Cornwall. Hope this explains it better.
A walk around High Tor or the coastal path sounds excellent and, I’m guessing , exactly the sort of thing to do!
I used to be a hill walker and carried on for a while. And yes, I know what you mean. As a once in a lifetime sort of trip my wife and I went to Svalbard and while I still could I managed to walk a while on the Arctic snow and ice ! Glad I did it and wouldn’t manage it now!
HF holidays has a good range of various ‘activity’ holidays from craft like activities to walking and hill climbing. My Dad (RIP) did some serious hill walking with them and I have a friend who goes on more gentle walking holidays with them once or twice a year because his wife isn’t able to do these things anymore ( for non MS health reasons). Go for it!
I don’t know about you, but I think a dx like ours promotes clarity of vision. Most people (me included) lived life in a fog and didn’t value the wonder of the day to day or how fragile it was or how quickly it could vanish. A life-changing dx causes to fog to lift a little, for a while at least. The trick I think is to hang on to that appreciation and sharpness of vision without lapsing back into grumbling about the cancelled train and the weather. If we can savour life a little more without being oppressed by the fragility of it, that’s a win, I think. But that’s hard to explain to civilians who still think they’re going to live and be active and free from disability for ever.
I think I need to find some people with a similar ‘sieze the day’ and ‘let’s go on a little adventure’ attitude to me. It’s the lack of that type of people around me that is leaving me feeling frustrated and stuck I think. I need to ditch Ground Hog Day.
I suppose we all wonder about how inevitable disability is, how much we get and when.
One answer might be, no - you might get run over by a bus, struck down with cancer, etc.!
My impression has been that barring that, disability is pretty inevitable but I hope to postpone the date/severity of decline by doing the right things.
That said, I have seen an MS neurologist say that “not ALL” patients progress. I wonder what the timeframe for that statement is - since I have come across people who did ok for 20 years+ but then went quite swiftly downhill. That said, I’ve heard that some people on autopsy are found to have MS-like lesions, but never had symptoms at all.
The other thing is we might hope for more treatments to come onstream, at some point.
But I think “seize the day” is a great outlook to have. MS is a wake up call. I’ve done quite a lot of SW coast path since my diagnosis and would be doing more - only there is also the need to earn money while one can and that robs me of the time I would use. Also, walking holidays etc. cost money. It’s a difficult balance to strike. If I thought my job/career were more secure, I’d actually work a lot less and use my free time.
