I guess this is kind of like a part two to yesterday’s blog before I was diagnosed. https://multipleexperiences.org/2018/06/25/before-i-had-multiple-sclerosis/
What I’m not going to write here is about my attack in 2014 that really disabled me. What I am going to say is what I would change if I could go back. Again hindsight is 20/20 but this is for the newly diagnosed and people more on the early side of their onset of multiple sclerosis.
When your first diagnosed, it’s tough. Most of the time though, you recovered from that first relapse and life goes back to something resembling normal. You might have some residual things but more or less life becomes more steady, until the next relapse. This becomes the pattern. For me, even with the MS therapy drugs, I’d still have relapses twice year. The hardest part for me was the steroids. Taking the four days of IV steroids and the taper, that was the roughest part. Then it took time before I felt better. It all amounted to easily a month. This would happen twice a year so you’re talking two months out of 10.
When things go back to normal though everybody around sort of forgets. Unless you have an apparent residual effects it’s normal that people will forget you have a MS. That’s why would you hear all the time, “you don’t look sick”. For me especially most of my issues with MS were sensory nothing you would really see. It was all feelings, numbness and tingling, it’s still is except now it’s everywhere. Now I’d love to have those issues. If that was all it was and I had 10 months of somewhat normal, I’d give anything. However that’s not the purpose of this blog.
It’s the resemblance of normal that makes us forget MS is still a daily fight even then. This is my list of what I’d change.
- From the day I got diagnosed (really my whole life but that’s going to far) I should have been taking high doses of vitamin D. Unfortunately upon the time of my diagnosis this information wasn’t known yet. However now everyone should.
- I should’ve been on a healthier diet from day one. Not because I was overweight, which I was, because it was healthier for my body. I ended up taking the healthy route about eight years ago which is better than nothing. I think it would’ve had a bigger impact from the beginning.
- I should’ve exercise more. Again I started this about eight years ago but I believe it would’ve had a better impact from the beginning.
- Vitamins I should’ve taken all the vitamins that I could’ve found. Again healthy inside promoting healthy functions was part of the best defense I could give besides my MS drug therapies.
- A positive attitude. I didn’t have this all the time. I didn’t have this even 3/4 of the time. I used to throw myself very big pity parties. Instead of being proactive I was reactive. I think it’s just the wrong attitude to go in with. It’s great now but now I’m at a point of being disabled.
- Know the research and what is out there. I think my blog for this, it’s kept me up on most of the MS information. Again on the months and years that I was feeling well I didn’t pay much attention, and I wish I did.
- Find support. Unfortunately this was my biggest problem. I didn’t have support from people either with MS or people that dealt with people with MS. I basically dumped it all on my mother. I have a wonderful support system with my family but you need the support of likeminded people going through or who have gone through similar things you are going through. It is good for you mentally.
Those of the things that I personally wish I could’ve changed and what I recommend to anybody newly diagnosed or early in their onset. This is just my opinion 20 years later.