Hazy times

I spent most of yesterday in a haze of headache, sleeping and head lapses. Feeling as though everything was happening in de ja vu, it’s really not a pleasant feeling.
Today I still feel hazy, everything seems unreal and out of synch.
These head lapses make me extremely exhausted after, very tired and unable to concentrate. My MRI scans can’t come quickly enough for me now, I want to know if it is some kind of damage or the M.E doing this.
It’s a really sunny day here, with my electric blanket on too im really hot.. But needs must, I cant move well without this constant heat.
I’m planning to visit my parents on Tuesday, it’ll be the first time I’ve been there since the beginning of March. It’s actually the last time I went out to something that wasn’t an appointment, I only just realised that! I do love my parents house, it’s the one I grew up in my parents have lived there for 43 years, it holds so many memories. Since my parents have retired my mum has been sorting the garden out, planting flowers, getting it tidy for her and the family, and we have a very big family! The garden is over 100ft, very hard to keep it tidy, my dad does the weeding etc and my mum sorts the pots, plants etc. She suffers from arthritis, has had to stop work because of it and struggles to do things. But the garden has become her focus and she really enjoys it, it’s good to see her do something that makes her happy.
I’m really really hoping that I’ll be able to go there, I will get to see my sister too which is an added bonus. Fingers crossed, touchwood and bundles of lucky heather I will be able too and spend a few hours with my mother, father and sister and sit happily in a house that was home for so long and always will be.

Aches and Pains

The Painsomnia I have been experiencing every night bar one this week I have to admit has dragged me down today. I’m used to being in pain and dealing with aches and spasms but this last week everything has escalated and my joints have joined in the fun causing pain I am finding difficult to deal with. I haven’t had this kind of joint pain before, my elbows, knees, ankles bones are throbbing and paining so much that I can hardly bend or move them. My feet and hands are also swelling much more than usual, my feet look like puffa fish at the moment.

The doctor visited this morning and poked and prodded me which jolted me every time. She was being gentle but even that felt like she was poking me with a hot poker. She has confirmed I am getting worse and I and my health is deteriorating which shouldn’t be the case, I should after 3 months of flaring be getting better. The oramorph should be helping with the pain, which it isn’t so she upped my dose, along with my amitryptiline and is contacting a rhematologist when she gets back to the surgery and fast track me an appointment. A nurse is also going to come out to me and take bloods in the next few days. My hair has been coming out in clumps recently and I showed her the amount that came out this morning and she was shocked and said she would order more bloods to be taken when the nurse comes. She doesn’t know what exactly is going on but as something obviously is shes going to order all things possible to get to the bottom of it.

I truly am thankful to have her as my doctor. Not only does she listen and discuss she takes action and will make sure I am getting the care and help I need. I wish every one dealing with chronic conditions had such a thorough doctor as I know many many people are left in agony and confusion when their doctor fails to understand or care. And this angers and sickens me. Everyone is entitled to the help they need, but some doctors just don’t understand chronic illnesses or how it impacts your body and life. I believe each dr should be trained to and this neglect of their patients would be a thing of the past.

I woke this morning after a night of nodding off at 4am then waking every half hour or so with pain until 8am. I was like a bear with a sore head, which is unusual as no matter what I can usually see the bright side of things. This morning I just couldn’t as the pain and tiredness took over. I’m feeling happier now, the pain is still there but my son and partner both have the day off and it’s been nice to have everyone home in the day which is very unusual even if I am in bed, there is activity going on around me.

But even with myself and health deteriorating, new symptoms and pain I am still luckier than a lot of people. I’m still here, still able to function to a certain level and have a wonderful family, son and partner here for me to laugh with, share moments with and help to pick me up when I’m down. And that’s what lifes all about, if you never had bad times the good times wouldn’t be as sweet. I wouldn’t appreciate the small things, bird songs, a hug, the sun streaming through the window, a hand to hold and the fact that I do wake everyday. No matter what state I wake in, I am alive. I am here. I am still breathing. That alone is worth the daily battle.