I’m not high maintenance……but damn I’m hard work!!!!!
Thank goodness I have a lot of supportive people around me. It seems like they’ve been having to hold me up for so long…..their collective strength is a lifeline.
Anyone that has read my blog before knows that I put as positive a slant on things that I can….usually, that’s easy, I’m fundamentally a positive optimistic person. However there are times even I fail to sparkle. This is one of those times.
I’ve had a few people say to me……but this has happened before, you must have felt it coming, why didn’t you do something to stop it?
Mmmmmm……good question. I felt my stress levels rising and did take measures to diminish that.
However….. a fibro/CFS flare does not creep up slowly and tap you on the shoulder and say boo…… it slams into you like a run away freight train with no buffer to stop it. It is an unrelenting, painful, soul sapping experience. There are millions of people around the world dealing with this and similar chronic illnesses…..a little insight.
As I write this my hands feel like they are 10 times their size, almost like I’m wearing a baseball mitt….stiff, awkward and extremely painful. I have shooting pains up my forearms like someone is sticking hot pokers straight up the centre of my bones. It’s the same in my feet and legs. Then you add the burn, oh the burn……it’s always there, it’s all consuming. Add a constant headache just short of a full blown migraine, constant blurred vision, irritable bowel and bladder. Everyone has a different cluster of symptoms, some are universal. Mostly the pain and fatigue.
I have had people say……I wish I could take a couple of weeks off and just lay around doing nothing. Guess what? Me too!!!! Yes I am off work and yes I am laying around, a lot, but trust me with all of the above happening in your body 24/7 you are hardly doing nothing. Just the symptoms alone have your body on high alert, constantly. I may look like nothing is happening but the body never stops.
Therefore you are exhausted, not just physically but mentally. Even when you are asleep, you never get into a deep sleep…..so you never feel refreshed. We all know that your body repairs when you sleep, but if you don’t reach a deep sleep state, no repairs take place. You go to bed exhausted and looking for relief but you wake up exhausted and looking for relief. Try and remember when you’ve had sleep deprivation…..maybe as a new parent or when travelling over time zones……eventually you have trouble concentrating, making clear decisions, retaining information…….welcome to our world.
I know there are so many millions of people who have it far worse than me in this world.
Fibro/CFS is NOT a terminal illness, it will not kill me. It isn’t even proven as to whether it is progressive, as in degenerative. I’m sure there are a lot of long time sufferers that would question that and only time, research and more information will tell.
There are way too many people dying from cancer, young children, healthy adults…..it is so unfair and the weight of that does not escape me. Too many people I know have lost that battle and it’s cruel.
There is no cure as such for fibro/CFS…..there are treatments which for the most part are hit and miss…..what works for some will not work for others. With it comes the merry go round of emotions.
You find yourself being forced to let people down…..guilt.
You can’t function as you want to……frustration.
You lose the ability to do the things you have always done…..loss.
You don’t have an end date for when life will return to ‘normal’…..fear.
You are unable to get to work……how much leave do I have left? How long will they keep me? What happens if they don’t? I know people personally that have not been able to work for years because of this…..it is a very real fear.
The end result…….depression.
And unfortunately that then perpetuates itself and the cycle continues.
As I said to my Dr last week……I’ve been doing so well…..he said ‘until you werent’. The trouble is when you are doing well you take it for granted…..this is my 3rd round of this…..this time round has put me back to where I was three years ago when it first introduced itself to me. The only difference this time is I know what I’m in for…..
So for all those people that look at me and say ‘but you look well’…..looks can be deceiving. It takes a lot of drugs, energy I can’t afford to use and makeup to get there. However I can tell you I don’t look so hot at present. What people don’t see is that yesterday I had my first shower in 3 days because I just didn’t have the energy to get there any sooner…..not one of my proudest announcements but the truth.
However….. I will continue to push through, I will always be a voice for those that struggle and eventually I will find my sparkle. When? I have no idea……but I will try and be patient with myself until that happens.
Be kind to others, be kind to yourself.
Don’t judge what you don’t live.