I have been learning to live with CFS/ME for almost a year now, during this period I have experienced a lot of highs and lows. This is all part of the recovery journey. As much as I hate the roller-coaster ride that my journey has become, I think it’s quite important to accept and embrace both the high points and lows points.
This can be easier said than done. Dealing with a chronic illness you seem to become more sensitive to everything.
The highs are a wonderful feeling, it’s like I’m on top of the world. Somehow I even forget that I have an illness! I have taken many small steps in my recovery and they have left me feeling a massive sense of achievement. These small steps are things that most people take for granted and do naturally with no problems. They are things like managing an outing to go food shopping, lasting 1/2 an hour out and about at the shopping mall or visiting a friend. These small steps are great steps to me, they are also signs that good things are coming and that I’ve taken a step closer in my recovery.
However the ups are the easy part. During a high period of my recovery everything seems clear, I’m much happier and more positive than I am during a low period.
The lows are the hardest part of recovery. Unfortunately only I can help myself during this time. Sometimes I find myself getting upset and angry at my body for letting me down or for even letting me have a taste of the highs. It’s almost like my body has led me to believe that I’m on the mend again and then out of nowhere ….bang! Back to not being able to manage much, with a couple of symptoms to go with it. Sometimes I fall into a dark hole and I just think to myself will this ever end? “Why did you fail me body? Why me? Why now? When will I get better? Am I going to be like this forever?”
Spiraling downwards into a negative state, doesn’t help the situation. I can’t afford to have this mindset, it makes the recovery a lot harder. A relapse in symptoms is never fun, but usually it happens for a reason. It’s possible I could have over done it, maybe it was something I ate or an activity I have done? It also could have been none of those things, just one of the many setbacks that come with this illness.
It doesn’t matter what it was, the best thing to do is to deal with it, it won’t last forever. Learn from it, my body is communicating to me. I might need to slow down. The best thing for me to do is to get back on the horse, it can only get better. Look forward to the ups and most importantly keep a positive frame of mind.
I can’t change my journey but learning to accept and respect my illness and its symptoms has made things a lot easier. I won’t bore you with any of my lows, but here are some of my best highs so far;
- My very first outing attending my brother’s 25th birthday playing barefoot lawn bowls. I couldn’t play, I was glued to the chair. It felt so good to be out and about again.
- Moving onto 2 kg weights for my exercises.
- I had birthday weekend (went out for lunch twice).
- I was well enough to go to the Mrs Browns boys live show, he even gave me a massive shout out for coming at the end of the show. It was so amazing.
- I’ve been out to dinner twice now.
- Visiting the pet shop and picking up my little fur-baby.
- Starting up this amazing blog.
- Visiting the shopping mall for the first time (it had been 3 months).
- Traveled up to Sydney to pick up our new car.
- My very first massive outing was to the Sydney airport to drop off my mother in-law. This journey takes about 1 hour to get there, it was a real big challenge. Since then I have traveled up to the airport 2 more times to pick up and drop off loved ones, and each time I’ve felt better and better.
- Spending 3 hours with my in-laws at a park by the Crounlla Harbour. They were over from NZ for a weekend in Sydney and we met up with them there.
I know I will have many more outings to come. I am proud of every step I take! The best way to embrace these highs and lows is to keep positive, this situation won’t last forever. I accept and respect my illness, it’s going to be a long hard road but the end result is worth it!
2 thoughts on “A Journey of Highs and Lows”
I can totally relate to this post. ME is such a roller coaster! The worst bit for me is the payback after you’ve been out and done something, you’re on a high because you’ve managed something that a ‘normal/healthy’ person is able to but then the next day or a few hours later it’s disheartening to have to deal with payback and almost suffer for wanting to do something that would be part of everyday life for most people xxxxxx
Payback can be so cruel!! It’s so hard sometimes as we want to try and do normal things, but there is always a 90% chance of paying for it the next day. On a plus side though I am finding payback is becoming less intense and it doesn’t go for as long! xxx