Flare Up Weekend
I watched Lady Gaga’s new film a couple of days ago after hearing she too suffers from fibromyalgia. I was pleasantly surprised by her as a person. What an amazing and talented lady. Her creativity shows no bounds. However, she is lucky in that she can afford all sorts of different treatment. The only treatment for people like me is rest and strong painkillers. Thursday I felt ok, well ok for me, Friday I was buzzing. I didn’t pace myself properly last week and this is why I am now in the midst of a flare-up. So now I am going to share with you the face of fibromyalgia – my fibromyalgia.
I don’t want to be one of those people that moan and whine about their health conditions but I think it is time to share my flare up with you so that I can bring a bit more of an awareness and understanding. Whenever people see me it will be because I’m coping – just. They don’t see how many tablets I have had to take or how they make me feel or the pain in my joints. But to Joe Bloggs, I look normal. That is the frustrating part. I think it is so hard for others to understand I think it is one of those conditions you need to experience to understand.
Today I was supposed to be having a meeting with the local newspaper Harrogate Advertiser about my new book and the things I do to raise awareness for mental health. However, it had to be rescheduled due to the reporter not being well; so hope she gets better soon I know what it feels like to be ill. Fingers crossed I will get to see her next week. I did not find out about the reschedule until an hour before so I had done my make up. Nothing exciting there you might think. But my make up days are few and far between. So thought I would take a selfie otherwise I would feel I’d wasted my make up. What kind of thinking is that – madness I know… But I’m glad I did because I wanted to show you my face right now compared to my face on Friday.
Now the photos above are of course of me. I still have fibromyalgia in those two photos but I am wearing a mask. You look at me and don’t see an illness. People think you are just imagining it. Well, Sadly I am not. People don’t see the effort you are putting in to get to that point. Most people can get up in the morning and grab their breakfast, shower and put their make up on and off they go. I put that makeup on at about 1.30pm. That is how long it took me to “defrost” that day.
Saturday I woke up and knew straight away it was going to be a bad day. I sat up in bed put my feet on the floor and the pain shot up my legs. The pins and needles were intense, and the back of my ankles were on fire when I walked down the stairs. My body felt like lead. I had no energy. It is not a case of feeling really tired. It is a case of feeling like someone during the night drained every ounce of your being.
I spent most of the day on the sofa, occasionally walking to the kitchen having to make a coffee using the microwave as the kettle was too heavy. Living on biscuits or cereal because you don’t have the strength to stand and cook. The curtains remain closed because the light hurts your eyes and your head. The TV is on but you don’t take it in your concentration levels have just gone and left you. Then the dizzy spells start, followed by more pain. The symptoms can be different every day.
Today I feel as if one person has tightly gripped my upper arm and someone else has gripped my lower arm and they are both twisting in opposite directions; I reach for the painkillers which take the edge off but only slightly but make me feel even more drowsy. I drift in and out of sleep throughout the day and I have no sense of time anymore – one hour blends into the next, night and day are the same, no let up when I am like this. Now I get into bed and my dog snuggles up as close as he can; he knows I am not right and stays by my side the whole time.
Sunday – The Face of Fibromyalgia
Well, I woke up at 4 am with the pain, that intense I had to grab a jug by the side of the bed as I know I woulnt be able to make it to the bathroom and I was violently sick. This happened a few times. It is now 12.31. I have no food in the house as I wasn’t able to get out yesterday. There is a packet of rich tea biscuits that I am going to nibble on as I just can’t face anything else right now.
I am wearing the same clothes that I went to bed in on Friday night. I barely have the strength to clean my teeth but I do because the taste in my mouth from being sick is unbearable. Eventually I made it downstairs very slowly, ankles burning with every step and get to the sofa. My right hip feels like someone has put a knife into it and it won’t stop. I have a weight on my chest, my eyesight today is blurry, I am struggling to type this. The only reason I can is that I am a trained touch typist and I can type without seeing the letters on the keyboard; a blessing I guess that I learned that skill.
So here I am, on the sofa, the same place as yesterday, curtains closed, I need to top up my electricity key but that’s not going to happen today. I will just stay here in a dark room, on my own, with Harvey behind my head.
Before I came downstairs I took a photo of myself in bed. I wanted to show you the face of fibromyalgia… The face I am wearing today; I hope you can see the difference compared to Friday’s photo. This is the face that greets me most days, a demon on my shoulder whispering in my ear, “ha ha you thought I had disappeared well I’m back and I’m going to attack you just because I can”.
Who am I to argue I have no strength. I just greet the demon with a grimace and tell him to do his worst.
This is the face of fibromyalgia…
I apologise for the lack of an upbeat post but I wanted to try and make people aware of what I battle with every day, some days are a lot worse than others. You never know what one day will be like from the next. There are a tonne of other symptoms which I won’t bore you with I just wanted to get over to you a glimpse into this condition.
I sincerely hope you are all having a wonderful weekend. As for me? I will now sleep and dream of a better day for tomorrow.
My love to you all