Why I have been quiet this week….

A lot of you may know that I have been suffering from a mystery illness for over a year now. I have had countless tests and scans as well as frequent meetings with consultants.

Recently, I was diagnosed with an undifferentiated connective tissue disease. Connective tissue diseases include Lupus, Scleroderma, Rheumatoid Arthritis, Polymostis and Dermatomyostis.

I have been diagnosed with Undifferentiated Connective Tissue Disease because, although I display many symptoms and blood results confirm the existence of autonuclear antibodies, I do not have the definable features of one particular disease. Effectively, my immune system is attacking my joints, muscles and cells.

Mariah Carey’s husband Nick Cannon has confirmed this week that he, too, suffers from “a Lupus-like autoimmune disease”. My sympathies go out to him and his family.

The difficulty with this illness is that you often look fine so people don’t realise how ill you actually are. Sometimes, because of the joint and muscle pain I experience, I can’t get out of bed. Sometimes I walk with a limp. Other days I appear perfectly normal. However, what people can’t see is that these antibodies not only attack your cells, bones and/or tissue but they sometimes attack your organs too so you have to be carefully monitored. The drugs given to sufferers often leave the patient with liver problems as the liver is unable to break down the enzymes in the drugs. Patients have to undergo regular blood tests to ensure their livers are still functioning effectively.

I am currently undergoing physiotherapy and acupuncture and am due to start hydrotherapy in a few weeks. At a meeting with my GP earlier this week, he told me – in the most insensitive manner – that I was clinically overweight. He then said to me, as though I was stupid and lazy, “Don’t you do any exercise?” I replied “Have you been listening to what I’ve been telling you? Some days I can’t even get out of bed”.

After this revelation though, I realised I need to do what I can to reduce my weight. While I’ve been poorly, I’ve eaten a lot of unhealthy foods as a comfort mechanism as I have had very few sources of pleasure. However, this week I’ve been eating a lot of fruit and trying to cut out my bread intake. I haven’t had a drink of pop (my biggest weakness) in 7 days.

I have also been swimming twice this week. Whilst in the pool, it is so difficult as I am in a great amount of pain all the time but I managed 15 minutes on Wednesday and 15 minutes today. It may sound like nothing to most of you but for me it’s a massive step. Today I managed to double the amount of laps I did on Wednesday.

I’m in a lot of pain now and  feel constantly hungry but I am determined to keep trying to eat as healthily as possible. Wish me luck!

Vic x


4 responses to “Why I have been quiet this week….

  1. Oh sweetheart, what a difficult battle you’re fighting. You have been so brave and patient with a system that has consistently let you down. I’m livid with your insensitive doctor – I experienced the same thing a few years ago when my medication caused me to balloon (even though I was playing sport four times a week…) and it really knocked me for six, so you have my utmost sympathy and I really admire your strength for trying to change your lifestyle. Keep fighting the good fight – you are an inspiration to me. Px

  2. Hi Vic,
    I saw your invitation to guest-post in The Village Idiots Writers Group (which I am considering, and I suspect you would make a wonder guest-poster on my blog – To Love, Honor, and Dismay). I’m sorry to hear of your health challenges. I know that family of diseases is called “The Disease with a Thousand Faces” since it presents so differently with various people, and is also why it can be so difficult to diagnose. My wife has a combination of Lupus and Fibromyalgia, which she treats quite effectively with rest and exercise. The exercise is particularly important for keeping her pain at bay – something to think about for you, possibly. She finds it difficult to imagine exercising on days when the pain is really kicking in, but as soon as she can get back to it she gets quite a bit of relief. No doubt your path to wellness will be unique to you. I wish you Godspeed in finding what works best for you.
    – Andrew

  3. I was sad to hear about your health situation. Will add you to my prayers. I’m reading “Letting Go” now with a new perspective. My sincere hopes for your good health.

  4. Thank you everybody for the kind messages you’ve left here and on other social networks. I didn’t write this post as a pity thing, I just wanted to make people aware of the condition. Thank you all again for your support, it really is so appreciated.

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