It used to be that I would have flare ups and more often than not, they would be the result of my poor pacing skills. However now I am having more flare ups than good days.
At first I thought it was just a rough patch but it has been months, a lot of months! Of course being laid up for a long period of time means that my fitness levels (term used lightly) are getting worse and worse.
I was first diagnosed with ME/CFS back in 1997 and I have had knee problems and arthritis longer than that, of course back then I still managed to be fairly active and now I have been housebound for over a year. What people don’t realise is that you don’t actually become stronger, yep I know it’s a shock, the memes that do the rounds speak of pain warriors and being tough in the face of pain.
Of course being a man people expect me to be even stronger, hell even I expect me to be stronger. However the brutal truth is that over time the pain and the battle chips away at you slowly and before you know it, you are broken and that’s no exaggeration. Being in pain every day for so many years takes its toll physically, mentally and emotionally and it leaves you very vulnerable.
People don’t understand this and I fully understand why, if I wasn’t experiencing it myself I don’t think I would understand. The slightest bump in life’s Road throws me, to onlookers it must seem unbelievable, they must think that I am either bat shit crazy or exaggerating.
Today is Sunday and I really don’t think I have even had one okay ‘ish’ day this week or even last week, in fact I can’t honestly remember the last time that I felt like I was having a good day. I keep on planning to start some form of gentle exercise to help the situation but I struggle to shower and so I have no idea how I can help myself?
Of course I’m flying solo, I don’t mean totally alone, I have my family but I don’t have any consultants, doctors, nurses or whatever helping or offering advice. My health or lack of health isn’t monitored and so its actually damn scary but I’m unsure on how to get the help. If I go to my GP (family doctor) and say “I need help”, I know that they will think I’m just a hypochondriac looking for some attention.
I don’t have a health problem that has the clinics to support it, well there is the pain management clinic but they have been as much help as a petrol fire extinguisher. So it’s a case of just picking up my monthly meds and plodding along, actually I would be so happy to plod along.
So anyway, here I am in flare again. Actually it’s just occurred to me that this might not be a flare, this could just be my good day level now, oh shit, no that can’t be right? Well let’s hope not, I’m sure it’s not and something is just wrong and I have an appointment with the GP in a week’s time and I am going to put my brakes on and refuse to move until they actually start being proactive.
Was this post actually about anything? I think I may have just waffled on!