A few weeks ago I had my 1 year official MS diagnosis anniversary. Such an anniversary is not one to be particularly celebrated so I let the day go by with not so much as a thought.
That is pretty much my MS strategy in a nutshell, live each and every day without giving it a second thought. Of course it does creep in occasionally, and that’s totally ok, but it doesn’t get me down, I won’t let it.
That’s not to say I refuse to talk about it, I am more than happy to discuss it if anyone brings it up. Things like this don’t just affect me but also my friends and family too, I have to be respectful of that and their emotions in all of this.
My only rule? Remain positive, it’s ok to talk about the things that scare us and we totally should, but I choose to remain in a positive mindset and I really appreciate that in any of the conversations I have regarding my MS.
Although I may not think about it a whole lot, I have made a few changes to how I do things. I still have a lot of changes to make and I am working on them. But I prefer to focus on what I am doing right rather than beat myself up about the area which are lacking.
I listen to my body I am happy to report that I am still symptom free, I have had no physical symptoms for about 3 years now, the only one was my initial red flag of optic neuritis that started this whole mess in the first place.
The tricky thing about MS is that sometimes the symptoms can be confused with things that can occur in everybody, pins and needles and extreme fatigue for example.
If I get a new feeling or occurrence in my body I have to distinguish whether it is just part of being a human or if it is MS related.
My doctor gave me some good advice to use as a benchmark, if you get a symptom that lasts over 24 hours, then it’s something to have checked out, otherwise it’s just usually the human body doing its thing.
I have noticed I am more tired than I used to be, I am also getting older, working full time, studying full time, blogging albeit badly and trying to have a social life.
I don’t think it is MS related as I can still function and push through, even still, I have made a conscious decision to listen to it and rest before it gets worse.
I know how ‘normal tired’ feels, this is a bit beyond that. My body hurts and my legs get a weird sensation and I know I need to lay down.
Even if it’s only for 20 minutes, it helps.
Like I said, I don’t know if this is MS related or just a side effect from getting older, either way, I am listening to my body and resting when it needs it.
Loss the stress Ahahahahaha Ok sure, what a great idea, stress be gone. I have had the worst motherfucking year in regards to stress, the universe pretty much threw all it had at me and said deal with it.
Im not going to lie, I spent a good part of this year stressed as a mofo, some days people would actually avoid speaking to me as it was slightly unpleasant (just ask my mum), I get it – id avoid me too. When I’m at that point I yell, scream and then cry at anyone who crosses my path. #TotallySane
While sometimes the stresses of life are unavoidable, there are some you can control. If you work hard enough you can actively choose your thoughts and run with them. I can’t do it all the time but I am getting there. I work really hard to not get caught up in the small stuff and know that 99% of my problems will look better and more achievable after a nap.
It’s a working progress but I know that stress can be a factor to a relapse onset so I try to manage it as much as I can.
Be careful of what you read / listen to
There is a lot of information out there on MS. Some of it useful, some not so much. Keep in mind that the more drastic cases are the ones that generally speak the loudest, I seem to find more sad stories then the good/ positive ones. I would personally like to see this change – hense why I write so openly about my story. I love it when people newly diagnosed people write to me and say that my story gives them hope, granted I’m only a newbie myself but the fact remains that a positive mindset is always going to be more beneficial than a negative one…. Always.
Just like news stories, facebook is also a place to be wary. There are a lot of closed facebook groups dedicated to MS and how to deal with it.
Groups that advocate no meds, cure with food, groups that are full of glass half empty stories and other options that I personally do not agree with.
By all means if this is your thing than join away, I do not judge anyone’s chosen method of dealing with their MS. I simply don’t find it useful, it does not serve my purpose and in some cases was making me upset. One day I decided to unjoin all of these groups and ive been much happier for it.
Choose your own path, just be careful and make the right choice for you.
Listen to your gut
After having my 6 month MRI scan I had 3 new suspected lesions appear on my brain, 1 appeared to be active. The results we a bit inconclusive and called for another MRI to clarify what she saw. My doctor wanted me to consider changing my medication. I currently take a tablet once a day and im done. My neuro wanted me to swap to the intravenous medication that involves me sitting on the chemo ward for 3 hours at a time once a month.
This intravenous option has a slightly better success rate than the tablets but also brings with it a set of side effects. Did I mention it also involves sitting on a chemo ward once a month?
I know that to some people that having a higher success rate option is a no brainer and to be honest before it was me in this situation I would have agreed with them.
Except this time it is me, and I know myself, sitting in that ward once a month would be damaging for my mental health. It would make me feel like a sick person. I simply can’t see how making me feel ‘sick’ and effecting my mental state like I know it would, is beneficial.
Not when I have another viable option anyway.
I told my neuro my concerns and begged for another chance to turn things around. I explained my stressful year and how things were better now, I knew if she would give me a chance and give my current meds another go things would improve.
She agreed and gave me 3 months to test my theory, if the results came back negative again we would have to reconsider but if they were positive then it was ok to stay on them.
Well, in September my 3 months was up, I am happy to say that I had no knew lesions and the active one looks to be dying down a bit. Accompanied with that fact I still have not had any physical symptoms it was the best possible news I could have gotten that day.
Im not going to lie, my face did err on the smug side after she read out the results….
I trusted my gut, it was telling me loud and clear that the current meds were the right option for me and I had to try my hardest to stay on them and give them a go.
Luckily it worked in my favour, of course if it hadn’t I would have had to go with the intravenous option but for now, I am happy to take my tablet and be done with it.
My gut spoke and I listened, this is what it needed right now and as its only voice had to do all I could to make it happen.
***Please don’t misunderstand me, I am not saying go against your doctor’s advice, I spoke to my doctor about what I was feeling and together we came to this decision. If my situation was crucial I would have never gone against her initial advice. It was a decision based on fact and carefully thought out with my doctor’s information and approval. I am simply saying if your gut is telling you something, look into it, discuss it and then way up your options. ***
I know I still have a few things I need to work on like eating better and exercise that are my next main focus but so far im happy with how things are progressing, I have been thrown this curve ball in my life and im just dealing with it the best way I know how. It’s a shitty situation to have to go through and I really wish it would just fuck off and go away. But it won’t, it can’t, not yet anyway. All I can do is deal with the cards I have been dealt.
In saying that I know how lucky I am, I have it so much easier compared to some others affected by this disease and believe me that notion is not lost on me. I know I am lucky and I am grateful each and every day.