Sjögren’s, taking control back!

Well that’s enough of feeling sorry for myself, I need to get some quality of life back. I need to control it rather than it controlling me! (Rewinding to February 2016)

The specialist has started me on Hydroxychloroquine but she said it may well take up to 6 months to kick in and that’s if it works for me, a little scary as I need this to work!

She said being a personal trainer it should stand me in good stead with this condition as I have an understanding of the body and understand the importance of exercise and nutrition. I hear her point but I can’t help feeling it’s a cruel hand to be dealt when this is my work and it’s going to make it tough.

However I do appreciate I have an understanding of what I need to do to give myself the best chance of controlling this condition.

Before being struck down with Sjogren’s I could do 20 plus perfect press ups to overnight not being able to do one due to the pain and weakness. As I didn’t understand what was going on I foolishly decided not to do anything for six months. After getting the ok from the specialist that actually exercise would help my condition, I got back to it.

Not as easy as I thought it would be, I would normally beast myself for an hour and feel energised and satisfied afterwards. I had to take my training back to basics, not only did every movement hurt but I could fall asleep whilst training, I would start yawning 10 minutes in. Not only that I would need to save some energy so that I could work after. Not an easy balance to keep! I decided to break it down into bitesize sessions 10 minutes a day, for the first time in my life I actually hate training but I need to keep it going religiously,its got to get easier….

I have always eaten pretty well but realise I need to step it up. I am very much a carnivore my favourite being steak. I would have this once a week at least. Not great for my kidney function though, so this was one of the first things to go. (I still have it as a treat occasionally).

Oily fish is the way to go, so i’m told. I now have oily fish three times a week, i’m not really a fan but I take it like medicine.

I also went to see a Kinesiologist which was very helpful, she told me I needed to give up diary which wasn’t a huge surprise to me. Dairy is very inflammatory and makes the body produce more phlegm. Having had years of suffering with my sinuses I really should have done this sooner.

The biggest change I made was to cut out sugar, difficult to start with but now comes naturally. Sugar in my book is an evil, for so many reasons, obesity and inflammation in the body. If i’m bad (which I am sometimes, I’m only human) my pain increases.

I have also reduced wheat, not that I am intolerant to it but i feel better for not having it.

So what do I eat….Fresh whole food, nothing out of a packet. I will cover diet in a separate blog.

I also take supplements, Vitamin D in very high dose 5000iu, Omega 3 and B Complex and magnesium.

Fatigue is my biggest battle on some level I can just put up with the pain. I’ve had to learn to say “no”. If I don’t I realise there will be a price to pay. So socially life has become a lot quieter (boring if i’m honest). I hope, as I get a better handle on this that this will change…

What has been really important in taking back control has been sorting my head out, I grieve the loss of the person I used to be. So I see a cognitive hypnotherapist, she has been invaluable! When I lose control of my head everything else seems to fall apart. My word of caution would be though is to seek out a good one.

I have to say with making these changes I am feeling so much better but still a way to go.


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