Living life with a chronic illness is like walking a tightrope, I never know what each day is going to be like, whether I’m going to have a good day or a bad one but I’ve worked one thing out, a lot of it is down to the way I tackle the days.

Most days I wake up feeling like utter crap, I could spend every day cuddled up in bed but honestly it would get me nowhere in life and there is a whole world to see out there and lots of fantastic people to meet. So as long as I take it steady I can generally be out of bed and dressed by lunchtime, planning my day, trying to do things not only for me these days but trying to help out at home.  
I’ve also worked out that self pity is worth, jack shit!! (Apologies for my language) I have tried the laying around feeling sorry for myself and it really doesn’t work, so now I just kick myself up the bum when I feel a little low, put a bit of music on that I love, generally some Kip Moore, Keith Urban or such like and I feel my mood lifts. Now EDS is kicking my butt, the pain isn’t pleasant or the gastro, bladder or many other issues but after three years so far, things aren’t going to get better, in fact they are only going to get worse, so hey I tell you what EDS you aren’t going to hold me back anymore, I’m going to live my life to the fullest, until I fall over, yep I’ve decided … I will walk every hill, dance at every gig and laugh my head off because I’m sick of being the sick, sad girl.
So on reflection EDS I’m done with what you have taken from me, I’m taking it all back, I’m not sure how fully, but I’m going to stand up and be counted, I might stumble, I might need shoulders to lean on, I might need support but I WILL do this. Sod you EDS, you won’t beat me. I will travel the world, I will see my children get married, I will see my grandchildren be born, I will live my life to the fullest, most of all I will grow old with the love of my life ❤️. He has supported me through the hardest of times and shown me the greatest love, we are so lucky, no I am so lucky 💕💗💕 

A Chat with my Dietician

My monthly catch up soon came round and Yanyee called to see how things were going and if there was any improvement.  I had taken on board a lot of what we had discussed last time, eat little and often, try and drink my Ensures and eat sensible healthy meals, not too late in the day.  However with slow motility and a gastric flare all this was making no difference at all. 

I explained to her that my peak of 53kgs had slumped to 49kgs and I was mindful not to let it dip any lower.  At my worst I had gone down to 45kgs and I was woefully ill at that point, so if I could keep myself near the 50kg mark that would be good in my mind.  She asked if I had reached out to my consultant but I explained that I was frightened, my fear was he might tell me my only option would be tube feeding if my intestines and stomach are being this difficult and for that I was avoiding the call.  She totally understood my concern, she soothed my worries and explained that we needed to talk options as with my weight fluctuation it wasn’t helping my other organs, so she asked if I would make the call within the next day or two?  I agreed, I hadn’t considered the strain my other organs may be under because of the lack of nutrition.

She agreed to call me in a couple of week, but I had her number and she would be available for me if I needed her.  She had been a great support, the best dietician I had met so far to be honest.

The next morning I dialled the appointments line at the hospital, I knew this call needed to be made.  I gave the operator my hospital number and explained that I hadn’t received an appointment and was due one in June, but could it be bought forward slightly due to complications of my condition. She faltered there, there was a problem on the screen, she went away and came back.  She wasn’t able to make me an appointment on this occasion as I had been discharged by the head of Gastro Entorology.  It had been decided I was “all better”. I explained that in my last appointment I had been given new medication, a blood test request and asked to be seen after three months, she said well someone higher up has over ridden that decision.  I just burst into tears, now what?  She said I would need to go back to my GP and start again, I said I’m sorry no I wouldn’t would you like to put me through to PALS, I’m not going to have a go at you, but I’m not having it!!

So my case is being investigated by the hospital, how could someone, anyone?  Decide from looking at some papers that I was all better?  I have a chronic illness that fluctuates the issues, so within a month of seeing my GI doctor I had lost 4kgs and was really bad again, but that’s ok with Wexham Park Hospital because I’m “all better”. So I will update you once I know more, because they forgot to ring me back when they were supposed to!!  They will wish, they had dealt with me appropriately when I have finished with them because right now I’m fuming 😡

A Catch Up with my GP

After several months my GP came back to work, I was due to get some repeat medication and with my gastric system in flare knew it was time to go and have a chat with him and see what he wanted me to do next.

As usual the booking process was faultless, online and simple, I really don’t understand why everyone locally moans and groans about our local surgery, I still haven’t experienced any issues with them yet, on the day appointments have always happened, the reception has always been helpful and supportive and  online facility is just the best thing ever !!

Along I went for my appointment and met with the doctor and after a few months off it was lovely to see him.  I asked how he was and he explained he had been in an accident, which had resulted in a fractured shoulder, I could empathise completely my shoulder was still painful and stiff.  I could see he was struggling to move it and was in pain.  We got down to business and discussed what had been going on since he had been away, going through letters that had been sent to the surgery.  I told him medications that I had tried and not done well on, so he felt I was doing my best on things I had control on.  However with my GI issues he was concerned that I had weight loss again, he wanted my dietician involved a little more and if she wanted additional supplements added to my diet he would be more than willing to go ahead.  He suggested I call for an appointment with my consultant in a few weeks to discuss feeding as his concern was the inability to continually feed myself throughout the day without pain or issues.   

I told him about my EDS appointment and the pain relief problems I felt I was encountering, so the initial plan was to try and use paracetamol regularly to keep on top of the pain and then only use tramadol of breakthrough pain.  Then in the not to distant future to hopefully start weaning myself off the pain patches, I know I needed to drop down a level in the aim to come off them but with the shoulder still agony would it be possible?

It was a plan, so I left feeling positive I had started the ball rolling to helping myself, to getting myself sorted out because I think that’s what it will take, along with the help and love of Andrew because I can’t do this without him.  Xx

Lung Function Testing

After seeing Dr Gall he decided I needed further testing, i thought I had been through enough but he is the expert 🙂  So off we headed to Kings and to the Cheyne Wing to find the Chest Wing.

Now not having Asthma or having been a smoker I believe I have a good lung capacity, so thought i would breeze through these tests.  Thought being the operative word in that sentence, do you know how much you take breathing for granted until you have to do something under instruction?

I was initially taken through to a large sunny room fully or large machines by a nice nurse, he explained everything, every step of the way, firstly he needed to put some cream on my ear to draw the blood into my ear lobe, they need to check the oxygen in my blood and the best blood for this is in the lobe or in an artery, now to get to an artery would be really painful, so the lobe is preferable, so they dab cream on it, it makes your ear get really hot and then they stab it, twice in my case as it didn’t draw blood the first time.  It worked second time and it filled up the tiny little tube with blood.

First lung test, they pop this blue peg on your nose and then make you breathe in deeply hold your breath, breath out …  all done a couple of time to find an average.  Once the technician is happy, onto the next test.

Second test, more complicated, it was several normal breaths, then a deep breath until I couldn’t take any more breath into my lungs and then hold my breath and then breath out.  First one went ok, next two or three were awful, last one I really had to concentrate it was the normal breaths to the deep breath that were throwing me off synch but by the fifth go I seemed to have got the hang of it and the technician seemed to be happy enough with the reading.

Last test was to check my CO2 readings, so a nasal monitor was added and the peg removed, now I was asked to rapidly breathe almost like hyperventilate, I had to concentrate on a word on a piece of paper with this because I felt faint and dizzy, so I was using my coping mechanisms not to blackout, he was counting me down and checking I was alright, i could just about hear him and could just say yes.  I was busy clenching muscles and focusing on the writing on this piece of paper on the desk in front of me.  If I didn’t I was going.  After ten minutes he said I was finished and we got all the monitors off me, I sat still for a bit and let the horrible feelings go away and then we were free to go, the results were going to Dr Gall who would analyse them and let me know what they were.

I have Lung Physiotherapy at the end of the month so maybe they will know what is going on but in the mean time that is another set of tests complete.  At least Dr Gall is a very thorough man, he ticks every box !!