I had a few spoons and now I don’t seem to be able to find them. Perhaps they are under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.
If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.
I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.
My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually. It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.
I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.
Since the meds adjustment (candesarten) my blood pressure is under better control. My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.
The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well
I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.
Bloods taken to check for renal and heart failure. I intend to ask for ANAs to be done soon.
Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.