Please someone ~ I need to know, is it real or is it all in my imagination? Am I suffering from a psychosomatic response to ongoing stress and depression. Is my mindset having real physical effects on my body, my internal organs, my brain?
I am so very confused right now and I am struggling to see which side is up. Where does one of my “chronic illnesses” end and the other start? Do they cross over, does one cause the other, OR did I psychosomatically create them?
I am becoming sicker month on month and it’s freaking me out! I detest being this “sick” person without strength or energy to carry out the simplest of tasks without huge post exertion malaise and pain. I miss being present, being able, doing. The 5~7 mile hikes with the dogs are but a distant fond memory and I am hoping somehow to be able to gain enough strength to be able to walk them at least a mile again one day in the future. I have to believe it will happen because otherwise what’s the point?
When you have been labelled with a chronic illness it would seem that all future issues are automatically put down as being a result of that illness. To have further investigations you have to push harder and shout louder. After a while you begin to feel that you must be imagining everything you are experiencing, as those you go to for help seem to be uninterested in examining the cause and just tell you that it’s to be expected with my illnesses.
I have been labelled with a number of chronic illness and my concern is that perhaps, just perhaps, I don’t have any of them and instead have something entirely different, as yet undiagnosed, which is causing all of my ongoing and worsening symptoms.
My diagnoses thus far are; Long Term Depression, Anxiety, Myalgic Encephalomyelitis (M.E.), Diverticulitis, Menopause, probable Hypermobility Ehlers-Danlos Syndrome (HEDS) ~ to be corroborated by Rheumatology when the appointment comes through, plus probable Chronic Kidney Disease going by recent blood tests ~ also to be reviewed by Rheumatology in case it is linked to some other condition as yet not diagnosed. Therefore renal referral will only be activated if Rheumatologist feels it necessary. Thing is, the general consensus from GP contingency is that most likely new symptoms caused by ~ you guessed it yet ~ The effects of M.E. on my body systems.
I am beyond frustrated, isolated, depressed and anxious ~ constant worry about what I am able to do each day and what has to be left to fester to be done who knows when. I loathe with a passion so intense being this person, feeling so inadequate and so useless and hopeless.
What I quest for is a definitive, treatable diagnosis that explains all my symptoms and that a treatment is available to help me regain some of what I have lost. A teeny tiny part of me holds out, ever optimistic, for a cure and to become fully well again ~ and if that happens I’ll be hiking all over the country with the dogs and my camera. To be able to run around and support my daughters and husband as I used to ~ to be able to join Dave and work alongside him at his unit would be heaven.
At what point do I just hold up my hands and say okay, you beat me, no~one can offer medical help and so I will just accept what is and gratefully take what I can each day. In all honestly although there are days when I want to do precisely that, to disconnect from my mind and body and give up, another part of me refuses stubbornly to give in.
I have started a journal today and wrote my first entry, pen on paper, it bloody hurt ~ my hand cramped up and I had shooting pains from wrist, through elbow to shoulder as I held that damn pen and wrote. It was a step forward, although a painful one, getting my hands to hold a pen and write. A simple task for most people but a painful difficult one for me as I mostly rely on dictating or typing which is easier.
I use alcohol as a crutch which must be making my kidneys and liver scream and so today I am going to try my utmost to go alcohol free. I can’t drop down to social occasional drinking as that just escalates and before I know it I’m knocking a bottle of wine back a night. SO, desperate times mean desperate measures and I am waving goodbye to my old friend. Its going to be tough, I am going to be tetchy and crave it but I am also determined to try and improve my health for the long term.
I hope the rheumy appointment isn’t too far in the future and I receive a letter with appointment date very soon. I am seeking and thirsting for knowledge, why am I the way I am, what caused it, why am I deteriorating, what measures can I take to stop deterioration and can I get better? If so to what extent?
I feel lost and lonely, tired and weary, so sick of fighting for any crumb of help from the medical side of things. Having just the one chronic illness like M.E. is tough, but having several makes it easier for medics to fob you off with “I wouldn’t worry it’s just another symptoms of your illness”. I am worried about my kidney function and hope that this is looked into and the appropriate referral made via my rheumatology consultant (when I eventually get to see whomever it is). Till then I will have to try and keep my mind calm, to stop it whirling around in a state of confusion, to quench the worry and try to self~care as much as possible to reduce symptoms flaring further.
Sometimes it is really okay to allow yourself to have these worries and angst, to sieve through the emotions and let them have their moment. It’s not okay to bottle these things up and for now I will keep fighting and hoping. Most of all I have to allow myself to just do nothing when my body and mind is stretched to it’s limit, to rest, regroup and restore my energy to the best they can be. Sometimes it’s okay if all I do in a day is breathe.