Sunday 25 February 2018

Elhers Danlos, Pneumonia and me. Oh my!

It has been over a year since I wrote a blog post because I guess I found hiding from it much easier then writing it! I lost my confidence in my writing (of my blog) but I have also been concentrating a lot of time on my poetry book which is more positive then the lack of confidence I have had in my blog! It is almost ready to go which I am really excited about. I will be selling it to raise money to help us fund trips to London to see my specialist and for equipment that will restore parts of my lost independence as well as an off road wheelchair that will mean I can once again yomp through fields and woods which use to make my heart glow. (That's a pretty big dream though as those things are exxxxxpensive!)

I'm not going to apologise for hiding from my blog because I think we all have times when we need to hide from things and I wouldn't want to pass my guilt on to someone else to make them feel like they should feel guilty when they hide from things. Does that make sense? Lots of really big life changing things have happened over the last year and I have been desperately unwell. When I write I never plan what I am going to write I just lose myself to the rhythm that my fingers make on the key board and it's only when I read things back that I really take in what has come out.

I've been in hospital for a month on Monday after being admitted because I hadn't been able to keep any liquid food or drink down for 7 weeks. Over the past 2 years with my gastro issues as bad as they have been it's not uncommon for me to go 3 or 4 days a week with nothing but it suddenly stepped up a gear. I couldn't even sit up without support from my husband. I have never known fatigue like it, it seeps into your soul! Before that started I had had awful flu for 3 weeks which I never really felt like I fully recovered from but I took it on board as my condition worsening. I didn't know for a second that actually it was because I still had a chest infection and it had never gone.

This blog is a warning to any person living with chronic disease, if you feel worse persistently over a period of time you jolly well make a song and dance until someone listens! Do not go quietly to your bed.

One day (since I have been in hospital) I was suddenly surrounded by nurses and doctors and being told it was ok they were going to take an x-ray "X-ray I thought, I'm not in the x-ray department!" I was hazy, confused and I couldn't breathe. I wasn't in the x-ray department, they had brought the x-ray machine to me! I was in and out of it all all the time but felt like I was drowning, truly, drowning. The pain was bursting in my chest and I just couldn't catch my breath. Like I said I was drowning. The next thing I remember is being slide off my bed and told to raise my arms. I was hearing things and seeing things but I couldn't put the pieces of the puzzle together. I was in the CT scanner. Why I was there I had no idea.

Then I was back up on the ward with a nurse I had never met before surrounded by equipment and hooked up to just about everything! Next was a deep pain in my wrists, worse then any tattoo pain I've ever had! Next the other side, someone had told me they were taking my blood gas levels but that didn't stick at the time. By the end of my ordeal I had had it done 6 times, 3 each side with the bruises to prove it!

The nurse was milling around me all the time, talking to me, comforting me but I really didn't understand what he was saying to me or what was going on, all I knew was I felt like I was dying. I remember several different voices telling me I needed to fight it and for the first time ever I felt like I was fighting my hardest and just had nothing left to give.

The lovely nurse who was with me all the time looked into my eyes and told me through what felt like 3 foot of glass between us that they were worried my body would tire much faster then a 'normal' body and if my breathing got any worse I would need to have my breathing taken over and they would have to sedate me. I zoned in on the word "sedate" and immediately as my chest burned on fire tried to tell him all about EDS and how sedation just doesn't work on me, I'd had an invasive procedure done before and no one believed me until afterwards that I wasn't sedated at all. Suddenly how little is known and understood about EDS felt HUGE.

I have been fed through an NG tube all the time I have been in hospital but I have still been very sick at times and I over heard the consultant deciding to stop my feed because I could not start being sick but the next night came another voice "If we don't feed her she will not have the strength to survive this" I was too unwell to take on the enormity of that at the time but I can tell you it's haunted me since.

I saw so many different members of staff over the next few days and was so unwell that I lost names, which department they were from and what was really going on but I have snippets of memories that seem to shine so brightly in my mind.

Someone told me they thought I had had this chest infection since my last one before Christmas and it dawned on me how unwell, how dangerously unwell I will let myself become before I push doctors for answers and it really shouldn't be that way. You become so accustomed to feel so unwell and being told so many times that it is down to your chronic disease that you don't throw books around when you're feeling so much worse then normal. I had pneumonia. That shit is serious! (excuse the language!)

I felt so breathless at times and so frightened that I honestly thought I would never see my little girl again.

What has really lit the fire up me is what if that had been my daughter? I have met so many health professionals in the past month, I wouldn't be exaggerating if I said 30 plus people have told me they've never heard of it and every time I have thought I have to path the way for the people who come behind me. I have to talk about EDS until I am blue in the face so the next young person coming behind me who they meet doesn't have to explain their condition when they are feeling at their worst.

Every tear I cry over my ordeal I have to bottle up and think it is one less tear for someone else to cry. I am so passionate about raising awareness of EDS because I have to be. How can I not be. I know there are literally thousands of people out there feeling like they are going through their ordeal alone and we have to reach them and tell them there is a whole herd of zebras out here waiting to greet them and bring them into the pack!

A zebra living with a chest infection that turns into pneumonia because they absorb that pain as another layer of their chronic pain is not ok and it is not the life I want for the next generation of zebras.

This is another black stripe on my back but I have always said we aren't the black stripes we are the white stripes shining through. I believe if all of us took the time to tell just one person about the true nitty gritty EDS we can grow this movement and go global! It doesn't matter if we don't live in the same country we have to raise the profile of this disease worldwide.

I don't mind saying this experience has left me traumatised and I enclose this part because, well, actually I am embarrassed it has left me feeling traumatised and I bloody well shouldn't be. I find myself at night replaying it all in my mind and thinking "Thank the Lord I was where I am when I went downhill because I went down like a lead balloon and Thank God I was on a ward where all of the staff have taken the time to get to know me so when they couldn't wake me properly they knew something was very wrong" You can't help but play the "what ifs" because you're human and that's alright. The main thing is you tell someone so you can access the support available.

I have learnt from it though and never again will I not push harder when I, in my own body just know something extra is going on. The pneumonia came on thick and fast but I had had that chest infection for a while.

I am learning not to be ashamed of my pain around doctors and I am learning to grow into a more confident me that is willing to get into it with a doctor because I, me, not anyone else, I LIVE in this body, she's worn out, she's overworked and she's resilient but she is MY body and if in my mind I know something is wrong I WILL keep pushing it until we have exhausted all the options before just accepting it is part of my EDS.

Unfortunately all the investigations with regards to what's going on with my gastro issues has all had to stop whilst I recover from the pneumonia but I have the last big test (gastric emptying test) on Wednesday in another hospital about an hour away because I couldn't have it done where I am until April! Once that test is done we will be able to move forward with a more long term plan. I can't go on as I was. I deserve a much better quality of life then that and I finally have a great consultant who agrees with me!

I'll let you know how it all goes and what the outcomes are as and when we know and have had time to process it all. Many blessings to you all. xxxxx