If you’re new to my blog ( where have you been?) when I talk of chronic illness and chronic pain it’s because I am diagnosed with M/E/CFS, Fibromyalgia and Joint Hypermobility. Which in very simple terms means I am constantly exhausted and I’m in pain ALL OF THE TIME! Yes that is possible. We may say we are ‘fine’ but internally our bodies are screaming. So you can also find out what we say and what we actually mean here in a post a wrote a while ago. However, I’m now 10 years into living with these conditions and I have become a dab hand at being resourceful at keeping warm in the winter without actually having to blare my heating 24 hours a day.
If you are newly diagnosed with any of these illnesses these tips will not only be helpful but will also hopefully save you a fortune in heating bills!
Our house has been extended and our bedroom is in a Dorma loft so that would mean me having to heat a 3 storey house with only me in it when my husband and son are at work. That just doesn’t make any financial sense to me to do that. I refuse to have the heating on full time when it’s not necessary. Just call me Scrooge!
Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia ( widespread musculoskeletal pain) and more recently Joint Hypermobility ( in hands- when joints can dislocate!). I have had chronic illness and pain since 2009 and even with high levels of pain medications including morphine I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I cannot remember certainly in the last 7 yrs or so of a time when I have been pain free. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death! The most frustrating thing about my condition is that it is completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin………….NOTHING. BUT MY BODY IS WRACKED WITH PAIN DAILY. It also varies day by day which doesn’t help at all. It is generally ( in my case) at it’s worst in the winter. I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!
So I thought I would share a code for what we say and what we actually mean to help you gauge how we feel on a particular day.
Now it may be hard to believe – how can someone be in pain all of the time even with very strong medications? A normal person’s brain is not equipped to understand chronic, consistent pain at all. Yes they can totally empathise if someone breaks their arm, or has the flu or even something like appendicitis because naturally our brains can understand what’s seen as danger or acute pain – pain that will be there until that body part has healed itself…………short term pain. They can imagine from past experiences how painful those things could be, but the normal brain is not equipped to understand a pain that does not go away! It’s just how we are made- and therein lies the problem.
Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in lay mans terms means I am permanently exhausted and have constant chronic pain (with lots of other symptoms but the list is too long to mention!).
I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment even though there was nothing similar in my area. So, after being diagnosed I was then left with no input apart from pain relief from my GP. I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.
This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness ( that means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin!). From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.