This week has been awful with regards to pain. I had read somewhere that humidity can be a bane for cfs/fibro sufferers, so whenever I notice that my pain levels are higher than normal I check the weather reports. Specifically the percentage of humidity to see if there is a pattern. Now I live in the UK, famously known for being wet and miserable, so basically this will be pretty much a battle that cannot be won. Anyway, Having checked the weather every day this week the humidity has been averaging 70-77%. It was at its peak of 77% on Wednesday (when I wrote the passages below).
“It’s gone 1am! I’m still tossing and turning, trying to find a position that is comfortable. One where the burning throbbing sensation in my legs and ankles actually eases. A position where my left shoulder is not shaking & twitching, and the sudden shooting pain in my back goes away. Hoping for a few blissful moments where it doesn’t feel like a pair of clamps above both wrists and around both elbows are tightening every few seconds. It’s time to give me a break. My body has felt like this since I woke up at 8 yesterday morning. By mid afternoon I was so exhausted mentally from it all I gave in to myself and had a lay down & cry. Closed my eyes for an hour curled up beside Mark. He slept, I didn’t! I had to keep moving to get comfortable. We were holding hands but I had to let go because the pain in my knuckles made my fingers scream.
Tonight though, it’s the same again. This is the worst I’ve had! I’m so tired I should be able to sleep. It’s the first night in 18 months that I’ve not managed to fall asleep as my head hits the pillow. I finished the last of the Amitriptilyne tablets last week… I know that’s what helped me sleep because if I forgot to take it, it would take me longer to doze off. However it would leave me feeling very dopey the following morning. It was no longer managing the pain so my doctor has taken me off it and started me on Gabapentin. Trouble is the pain is getting more intense and seems to be everywhere, even in places I didn’t have pain before.
I see him again on Monday, but already I feel like I can’t wait that long. I’m too tired to cope anymore. Earlier I walked from the bedroom to the bathroom in tears because I couldn’t put weight on my left foot – it felt like I had a bad knock on the ankle bone. It’s not felt like that since it was last in plaster (2010).
My body isn’t my own today, I don’t know who this person is. As far as I can make out there is no physical reason why I hurt this bad but there is no mental one either. It doesn’t make sense. It’s upsetting that I feel I let those I love down by not being able to even cook a meal, it makes me angry that my body is betraying me. Am I being punished? If so what for? I have no idea.
Tonight all I want to do is sleep. It’s incredibly lonely lying in the dark, trying to keep the crying quiet so as not to wake up Mark. Part of me wants to wake him so I’m not alone, so that he can comfort and soothe me, calm & relax me in the hope that sleep will soon come. But the part of me that loves him more than I could ever begin to describe wants him to sleep to remain blissfully unaware until we are reunited in daylight. He’ll tell me I was daft to suffer for hours on my own, but he looks too beautiful sleeping. So for now I just write all this nonsense to get it out of my head, as much as I can because even holding the phone is causing extreme pain in my forearms.”
Mark woke up in the end and we had a chat and a calming session (with tea) until about half 3 am. Mark understands the pain levels very well (he has back issues that have plagued him his entire life) especially when our British weather is damp and humid. So our chat did help me a lot, as this is all fairly new to me.
I also found a sleep app called Relax Time, similar to the Sleep Stream app that I used to use on my old phone to see if that helps me. I particularly like the alphawave, it lulls me into a relaxed state. The bonus is, Mark can’t hear it so it doesn’t disturb him. It did help, but last night I found it irritating so didn’t use it. But I shall keep trying it.
The pain had leveled off a little yesterday, but because I am still worse than I am used to I decided to try some other methods that I have been reading about. So before bed last night I ran a nice hot bath with about 10 drops of lavendar essential oil. While I was in the bath I used another app on the phone, Hypnosis – Free realxation 3.0, and used the progessive muscle session. Seeing as I have been too unwell to exercise this week I thought that I should try some gentle muscle exercises. This felt great! Especially with a deep hot bath. Afterwards I felt relaxed and the pain had eased off (for about an hour or so). I did sleep better last night.
This morning, I decided to do the progressive muscle exercise again before getting dressed. This time laying flat on the bed. Again I felt more relaxed than I have all week, but the gentle exercise which is only about 15 minutes long did leave me feeling very fatigued. So I had to lay quietly with my eyes closed and breathing gently for about half an hour before I was able to function again.
I am going to keep trying this out though, especially when I am in so much all over pain and can’t bare the thought of taking a walk. It will be interesting to see how and if it works. In the meantime I will be back at the doctor’s on Monday to continue discussing pain management as 300mg of Gabapentin a day is most defintiely not working, and my emotional state has become very fragile again. I also feel the need to speak with a nutritionalist or dietician. Since finding out about the IBS I have discovered that my worst triggers are Sunflower and Vegetable Oil. This is not a good thing as we are finding that almost every food product has one or both of these products and I really do need some guidance.