Hi All - I am an MSer from Canada - have been a member for quite some time and just hit my 10-year anniversary with Relapsing-Remitting MS in October 2014. I have been more of a "learner" on the boards, and not posted often - as I have appreciated reading comments from other seasoned members.
I have been on Avonex 9 years. As my husband and I are working with a decent income, we have Pharmacare - which means we pay about $10, 000. yearly, before all our medications are cost free. If our income goes down, the deductible reduces. I have been very lucky with the Avonex - very limited side effects (just two days of headaches post injections - easily managed with Tylenol) Yes, the meds are expensive, but I think the system is fair with income needs assessment - our tax dollars at work - don't have to pay the full 30K, or pay private insurance company rates.
I am very grateful I have been doing so very well with MS - even to the point of having "survivor guilt" - when I hear how other MSers are being severely impacted their symptoms. My MS doc thinks that I have had a fairly positive attitude and acceptance of the MS - but I always think that I am very lucky as things could be much worse. (cancer, ALS - or any other terminal conditions).
I do have fatigue that sucks me out, but not enough to keep me from working a desk job - It does limit my number social activities. I have constant numbness and discomfort in right hand - and have had some serious burns and cuts to hand and fingers with meal prep - just need to be watching better. I have balance and cognitive issues (brain farts) when I have been tired - and a hip bursitis that is taking a long, long time to respond to physio. The physiotherapist says MS is delaying the healing process (can't take anti-inflammatory meds). I think that was my first frustration with MS as I had been in constant severe hip pain for 1 1/2 years; it is just now starting to alleviate some of the pain)
We did not know what to expect with the MS, so we moved from the country to a city condo with elevator, underground parking and a walk-in shower and in-suite laundry. This has made a huge difference for me in saving personal energy, seeing family and friends, and easier access to medical support. I am so glad we did that when we did, because with the bursitis - I could barely climb 3 steps.
I have been keeping a symptom journal - and while some more things are popping up; they have not been severely impacting my day to day living - just had to adjust and accept there are changes (but is it also to be expected with getting older - I am 57?) Moving before we had to has made a helpful difference in accepting some of the physical transitions.
I am not naive in thinking that all will continue to go so well, and I have heard that things could change after the 10-year mark. I have lost and gained some relationships because of the MS -- some people did not know how to handle it - they either wrote me off, or became medical experts....
I have decided not to apply for new jobs or promotions in order to preserve my energy & reputation - I still have credibility and good attendance in the current job with fairly comfortable income.
My spouse has been accepting of the MS. After our relationship counselling, he has moved from over-protective to balanced support - we eat out or order in more often... the housework may not be as thorough as once was and he is getting more familiar with the dishwasher, toilet brush and laundry. We also have good humour about it (I can blame "it's the lesions" when I chose to forget something he has asked....).
Friends accept that I may not be able to do the walks or evening events as we once did.
So what has happened in the last 10 years?
- I have moved from believing that worse-case scenario is going to happen; to expect the worst, hope for the best, and somewhere in the middle is an acceptable place to be in.
- Knowing and accepting my normal abnormalities ...and normalizing the work-arounds. I have also learned not to panic with each new symptom if it does not severely impact my daily activities(it keeps me calmer). I only check in with the doctor when it is serious.
- Knowing when to push myself and when not to; but also to plan for being tuckered out...(eg we did a big dinner, but planned for the next day or two to be restful - no demands).
All in all, MS is not a nice thing to have, but I am doing OK.
I have been on Avonex 9 years. As my husband and I are working with a decent income, we have Pharmacare - which means we pay about $10, 000. yearly, before all our medications are cost free. If our income goes down, the deductible reduces. I have been very lucky with the Avonex - very limited side effects (just two days of headaches post injections - easily managed with Tylenol) Yes, the meds are expensive, but I think the system is fair with income needs assessment - our tax dollars at work - don't have to pay the full 30K, or pay private insurance company rates.
I am very grateful I have been doing so very well with MS - even to the point of having "survivor guilt" - when I hear how other MSers are being severely impacted their symptoms. My MS doc thinks that I have had a fairly positive attitude and acceptance of the MS - but I always think that I am very lucky as things could be much worse. (cancer, ALS - or any other terminal conditions).
I do have fatigue that sucks me out, but not enough to keep me from working a desk job - It does limit my number social activities. I have constant numbness and discomfort in right hand - and have had some serious burns and cuts to hand and fingers with meal prep - just need to be watching better. I have balance and cognitive issues (brain farts) when I have been tired - and a hip bursitis that is taking a long, long time to respond to physio. The physiotherapist says MS is delaying the healing process (can't take anti-inflammatory meds). I think that was my first frustration with MS as I had been in constant severe hip pain for 1 1/2 years; it is just now starting to alleviate some of the pain)
We did not know what to expect with the MS, so we moved from the country to a city condo with elevator, underground parking and a walk-in shower and in-suite laundry. This has made a huge difference for me in saving personal energy, seeing family and friends, and easier access to medical support. I am so glad we did that when we did, because with the bursitis - I could barely climb 3 steps.
I have been keeping a symptom journal - and while some more things are popping up; they have not been severely impacting my day to day living - just had to adjust and accept there are changes (but is it also to be expected with getting older - I am 57?) Moving before we had to has made a helpful difference in accepting some of the physical transitions.
I am not naive in thinking that all will continue to go so well, and I have heard that things could change after the 10-year mark. I have lost and gained some relationships because of the MS -- some people did not know how to handle it - they either wrote me off, or became medical experts....
I have decided not to apply for new jobs or promotions in order to preserve my energy & reputation - I still have credibility and good attendance in the current job with fairly comfortable income.
My spouse has been accepting of the MS. After our relationship counselling, he has moved from over-protective to balanced support - we eat out or order in more often... the housework may not be as thorough as once was and he is getting more familiar with the dishwasher, toilet brush and laundry. We also have good humour about it (I can blame "it's the lesions" when I chose to forget something he has asked....).
Friends accept that I may not be able to do the walks or evening events as we once did.
So what has happened in the last 10 years?
- I have moved from believing that worse-case scenario is going to happen; to expect the worst, hope for the best, and somewhere in the middle is an acceptable place to be in.
- Knowing and accepting my normal abnormalities ...and normalizing the work-arounds. I have also learned not to panic with each new symptom if it does not severely impact my daily activities(it keeps me calmer). I only check in with the doctor when it is serious.
- Knowing when to push myself and when not to; but also to plan for being tuckered out...(eg we did a big dinner, but planned for the next day or two to be restful - no demands).
All in all, MS is not a nice thing to have, but I am doing OK.
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