Living with a chronic illness. Blog 3

So life carried on, as it does, and I got on with it basically. 

Every couple of months I became very ill, I'm pretty sure this was exhaustion from life!

I'd end up in hospital every now and then and feel totally alone, doctors came to visit me, I would explain things and I'd get vacant looks, silly really because there's this huge hospital that I was going to every few months and seeing specialists, rhuematologists, etc....... They knew what was what so why didn't these doctors? In the end I gave them the telephone number and said "ring them!" 

I even found out there was a rhuematologist in one of the hospitals I stayed in! Why didn't they call for her?

This was to become a common problem!

One day whilst in hospital, I was on Facebook on my phone when I stumbled across a post on an American Sjogrens group that read "where is everyone in the world today?" I glanced down the list of posts, Texas........LA..........New York.........Leicester UK........Missouri....... Hang on... What??? I scrolled back up, Leicester? The name was Cara Davidson, I immediately wrote underneath Wiltshire UK......

Hoping she would see it, then thought il add her as a friend, so I did, then I messaged her, "at last someone in the UK!" Her reply was the same " I can't believe it, someone in the UK!" 

This lead on to other conversations about the fact that there are no uk groups, and that meds, procedures benifits etc..... Were all completely different over there so we didn't understand any of it,  so we decided to start one.

Cara chose the name Sjogrens support UK. Perfect! 

 I set it up with us as admins, we scoured the American sites poaching everyone we could from the UK.

We decided to accept anybody with any autoimmune disease, be it Rhumatiod arthritis, lupus, fibro,etc...... The list is very long.

The comments were the same, "at last a UK group!" That was may 16th 2013, today the group is a massive success, and has gone from strength to strength, we now have over 500 members, friendships have been made, lots of advice given & received, and so much has been learned. 

Everyone has very similar tales to tell of doctors not knowing enough and how long it's taken to diagnose them.

 but we are no ordinary group, we play games, have competitions, we even have a naughty step! Lol and we've had virtual parties where we put up pictures of food and drink, a dance floor and music, we've had tears and we've had laughter, but most of all we are all linked by the same thing.....autoimmune disease.

The early days continued. Blog 2

Mixed connective tissue disease, what a mouthful! Sjogrens! Where do these long awkward to say words come from?

well Sjogrens was discovered  by Henrik Sjogren, a Swedish ophthalmologist.

Extremely clever I say seeing as it's such a complex illness, just about every symptom of illness I've had can be down to the Sjogrens or auto immune disease! You wouldn't think it but it's true, practically any symptom can be put down to These, so how do you know what's what? Well you don't really.

After my initial shock of being told my Sjogrens wasn't primary, that in actual fact it was secondary (meaning I have other autoimmune disease/s) Mine being Rhumatiod arthritis, I tried to find out as much as possible about this awful illness, because I think I still found it all a bit of a bad dream! 

I went to my local book store which happens to be a very large and very well known one, I went straight to the health section expecting to find a Sjogrens book, but nothing! 

I went to the counter and asked the young girl who said " a book on what?" Now I'm sure people don't mean to smirk when they say it but everyone has, its because it sounds so odd, and I admit I did the same, it's either that or they say " that's a 4 x 4 car isn't it?" (If I had a £1 every time I heard that!) 

Anyway after explaining it was an illness she typed it into the computer, after asking to spell it first of course! 

To my surprise she said "there's 1 book, it's £5.99, shall I order it?" 1? 1 book? I thought!

"Yes please" I answered.

My book arrived the following week and it was tiny, I started reading it straight away & finished it very quickly, oh dear I thought, this is going to be a difficult disease to find anything about, and I wanted to know all about MY illness! Every time someone says to me I've got..... or my friend has...... If I don't know much about it, I research it, I like to know these things, well this was about me so I wanted to know even more.

So I did what everybody says not to do......I googled it, and I actually found out loads.

Don't get me wrong Google is a good tool if used properly, I would never rely on it 100% unless it's the NHS choices website or Arthritis UK which I have used this lots of times since and found them invaluable.

I think my lack of complete understanding of this disease left me feeling very worried, therefore I couldn't talk about it, I'd told my husbands and best friend the full story  but I told my children an edited version.

I just didn't want to go through it over and over again, all I did was cry if I even thought about it, so my parents didn't find out for over a year, I just didn't want to worry them.

And it took a further 2 years to come clean to all my friends and others who asked.

My first medication I was offered was Amitriptyline for my bad headaches, 25mg every night,

For the first 3 months all I did was sleep! And that was a low dose but then I've always been a cheap night out ! 

I didn't mind though because the headaches were a thing of the past, oh the relief! :)

The next medication was Hydroxychloriquinine or plaquenil (cheaper but the same) this is a DMARD (disease modifying anti rhumatic drug) so it dampens down the symptoms of the arthritis.

I didn't think much of this drug until I was taken off it because my liver threw a strop and then I really missed it! Lots of pain :( 

I would now actually recommend it.

The third drug and these are all pretty much standard I might add, was Naproxen which is an anti inflammatory. And of course omeprazole which comes part & parcel with Naproxen to protect the stomach.

I definitely need that as I've suffered with my stomach, acid indigestion, heartburn, IBS which is all related to Auto immune diseases (see I told you!) 

The forth was of course good old pain killers, co codamol to be precise, 30/500mg which is the highest dose but I already had them in the past for my bulging L5 S1 disc in my back, 

Once on these lot I started to feel so much better and my symptoms were calming down. 

What a relief!!! 

Find us on Facebook Sjogrens support UK : https://m.facebook.com/groups/454589521294750

#myimmunesystemattacksme #morethanmeetstheeye