And now-in an attempt to distract you from thinking about my large head- I think I'd find it helpful to put some of my thoughts to paper (or to screen since it's an online blog.) I was at neurology today for a consultation. It went ok- apart from the fact I received multiple pin pricks to my face and body to test if I could feel them...and in most places, I certainly could :( Anyway, he is sending me for an MRI scan and a nerve conduction test. These will ultimately show if the problem with my pain lies in with my brain/nerves/spine. The neurologist thinks it will come back clear, and I'm pretty confident they will too, but I am pleased to be getting these tests done as it will at least rule out that area.
I have received a diagnosis from rhumatology of joint hypermobility syndrome. This means I have an abnormality with the collagen in my body, causing my connective tissues to be extremely loose. It can also affect connective tissues in other areas like your lungs and bowels. As a result, the other areas of my body have to work harder to maintain stability and strength. As you can imagine, this can cause a great deal of pain and exhaustion. I accept this diagnosis but since very little is known about this condition, I'm not really getting the amount of support or information I need.
I was referred to neurology a while back and thought I would still go because there is no harm in ruling other things out. I also have wee niggly feelings now and again that there could be something in addition to my hypermobility and so would like for my mind to be put at ease. I often convince myself that I am just a hypocondriac or foolish (and maybe I am), but then again, I feel like I owe it to myself to search out every possible avenue and leave no stone uncovered.
I have tried to reseach hypermobility syndrome on the internet since I have received very little info from medical professionals. This presents a problem because you have to be very discerning of validity of the material you read. Most articles and sites I have came across acknowledge that a major symptom of the syndrome is pain. But I have yet to find a site that would describe pain similar to my own. Most sites seem to imply that you can still lead a relatively normal life, work, dance, carry, deliver and raise children and exercise.
Either I'm a total woose, or the pain I experience is different to most experiences. I would probably argue the latter. I have been unable to work since last summer and my gentle physio exercises leave me in a lot of pain unlike the runners, dancers and athletes in these case studies who can still maintain an active lifestyle.
This condition has changed me an awful lot. And I am still struggling to get to grips with it, understand it, and gain control of it. I have the joy and privilege to hand this burden to God every day, and He is faithful in His provision. But of course, I desperately want, and need a way of intervention with the daily pain too. I believe God gives us doctors to help us with these things and I see nothing wrong with having hope that doctors will give me a solution to my physical struggle.
I also believe that God can remove this completely if He chooses- and I am most certainly believing and praying for that too. But one thing God does in times like these which no doctor can do, is heal and transform my heart and my soul. I often return home from appointments restless, and utterly deflated as it often provides no answers or hope of treatment. Doctors tell us there is nothing they can do and we are left to our own thoughts at home. But God is there when I get home and can still my restless heart. God can see every pang of anxiety, and speak into every area of doubt.
We often forget the devastating toll a chronic illness can have on people emotionally as well as physically. I'm trusting God will use the doctors to deal with the physical illness. And God can take care of my heart.
Me on the left...this was the last time I wore a hat before my head expanded due to being crammed with thoughts...
No comments:
Post a Comment