I was diagnosed with relapsing remitting MS in 2011 which knocked the wind out of my sails but I have grown to accept it in my own way. I am a positive person most of the time and I get on with my life, I work 30 hours a week and try to do as much as I can BUT some days I find I am silently screaming. This bloody disease is so hard to put into words and loved ones don’t understand as much as they try and I find myself screaming in my head in frustration because every day is the same, I don’t wake up and think I feel a bit better today because I don’t, all the symptoms are the same and nothing has improved. I can’t pop a pill and make it disappear. Don’t get me wrong, most days I am ok and I squash down my anger at this disease but some days it’s hard to keep up the happy I’m ok face, no one really wants to hear how I am feeling and u don’t like to bore people with constant moaning, they have there own problems and they wouldn’t understand anyway. I am silently screaming today, I’m sick of the burning, tingling, pain I constantly feel in my legs, the weakness, the fatigue, its psychological torture but I’m sure I will wake up tomorrow feeling better and more able to cope. To have a day of my old self would be amazing but that is never going to happen and I know that, and I have learnt to carry on as normal and I feel I have done a good job so far convincing people I am ok but I am not ok, this is not self pity, I am carrying on with my life, I’m just having a bad day. Any hoo, I know u guys understand because you have to live it to understand it. This is just my little rant, I will be ok tomorrow.
That’s just summed up my husband’s Fibromyalgia too Emlou. He’s been dxd for 10 years now. Try as I might to sympathise and understand, I just couldn’t. I would get fed up of hearing the early morning moans, how tired he still is after a full nights sleep, how stiff and sore he was, how much his knees hurt, how it how he doesn’t actually function until he’s been awake for a couple of hours, the brain fog! Then last May I was dx with ms, suddenly without any warning. I understand now alright…
I completely understand what you are saying, I sometimes play the game of wondering how much of my future life I would trade for a day without MS. I then plan what I would do with that day. This usually includes playing Squash, riding a motorcycle some skiing and snorkelling. Then settle for a long walk without the MS risk of falling over. It is all so relative, I do know that lots of people here would give their right arm to be as healthy as me but this does not stop my silent screaming about all my stuff that either hurts or does not work properly.
Sometimes a good rant does you the power of good. I wouldn’t even stick to silently screaming. Occasionally a damn good shout, swear, hissy fit, tantrum does the job as well. Even if it’s only when you’re alone.
Yes, MS is a shitty disease. You shouldn’t expect to have a happy smiling ‘game’ face on at all times. And sometimes, I’m sure your friends and family will want to know that it’s a miserable thing to wake up to every day. I know that I try to keep up the ‘I’m OK’ facade, but sometimes I tell good friends that I’m feeling particularly crap. No one can be expected to know how you feel unless you tell them.
Like Mick said, it would be a great thing just to have a day off. I’d like just to be able to walk, without any mobility aids, maybe skip a little bit too. Just for the pure pleasure of it. Just for one day.
And if all else fails, come on here and have a good shout to us.
That’s very well put. Don’t we all grieve for that part of us - or our lives - that died? Perhaps the road to a peaceful future would include more acceptance.
It’s all very well adopting the “I Am Invictus” attitude but MS is one game that no one is likely to win in our lifetime.
Defeatist?
"The green reed which bends in the wind is stronger than the mighty oak which breaks in a storm.” (Confucius).
You rant as much as you want Emlou. I get what you are saying.
When family/friends ask how I am I always say “good thanks” but truly I am not. I hate saying how I really feel as then you get their well meaning advice on how things will be better if you do this or that. They really do mean well but how can anyone truly understand. Apart from us lot that is. As you say we all understand as we are living with the disease.
It can sometimes be useful to validate close friends and family by asking " do you really want to know?" depending on the reply you can either respectfully say “fair enough” or try to explain a bit without becoming a bore.
I have found that this can lead to or avoid “interesting” conversations.
I feel the same as you. Some days good, and some days utter crap . Always try to keep a brave face on it though, which I am sure you know is never easy !!
brave face on?! no-honesty (for me) is best policy.
how am i? mentally strong and physically weak with a view to that changing at any minute…
enjoy the sun and do what ever u have to in order to get thru the next 15 minutes (then another will follow…) by bedtime then another day will have been lived.