My husband is a lucky man! Ok, so maybe that is a tiny white lie. It was this more...
Ok, jeez, I'll stop lying. In all seriousness, it was....
I am not and nor do I pretend to be a morning person anymore. Pre child I use to love waking up ridiculously early and being around in the calm hush of morning before everyone else started waking up. Especially in Summer. Even now the one time of year I can truly tolerate and actually appreciate my periods of insomnia is in the summer. I love when at 3.15am (ish) the sun starts coming up, the birds start singing and you can tell even then that it will be a beautiful day. I often go and sit in the garden at that time if I can't sleep.
Having birthed a baby that never really saw the point in sleeping (I wonder where she got that from?) my love of mornings quickly disappeared! Amelia-Rose fed hourly for the first three months (I breastfed and she never quite got the whole having big feeds to fill herself up thing. I also became 'the human dummy'. I'm not moaning, I chose to feed on demand) and pretty much every 2-3 hours until she was 6 months. Did I mention that was day AND night?! As the months rolled on neither of our sleep patterns improved. It was only when she started school that Amelia-Rose truly started sleeping through the night although she still wakes talking and getting upset in her sleep but she resettles now fairly quickly.
Anyway, I digress. My pain is always worse first thing in the morning and last thing at night. Everyday as I stir from my sleep but am yet to open my eyes to the day the first thing I feel is pain. To really 'get going' I need my medication to kick in (20-30 minutes) but as my swallowing is also its most painful when I wake up I now need to wake up, sit up (for a good 10 minutes) and slowly sip something before I can gulp to swallow my meds. It makes mornings when we have to get up and leave early very difficult.
But we did it and left the house only 15 minutes late. Hoora!
We were met off the train by someone who has been supporting us greatly through our church although I personally have never met him (we go to the same church but different services) We've been in email contact for a few weeks and he has been guiding me through the ins and outs of the NHS. As he lives in London Monday to Friday he surprised us at the station and walked us out to the taxi rank. It was so completely wonderful to be met straight off the train by such a friendly face! It really was!
We arrived at the hospital with enough time for a quick toilet break and went up to the clinic where we waited.... and waited... and as my appointment time came and went by 20 minutes I started to panic we were in the wrong place (as I had received a letter telling us the clinic has moved to a different part of the hospital I started to think maybe it has changed back to the original location) Tony went to ask at the reception if we were in the right place which thankfully we were! Now at UCLH you don't book in with a receptionist as you go to the department where all the various clinics are there are screens where you check in and it tells you where to go. Much like at our local GP surgery.
They asked for a urine sample and took my blood pressure and then it was back to the waiting. It was obvious the nursing assistants were starting to get a bit flummoxed themselves and it was then we realised the Dr I was waiting to see wasn't actually in the clinic at all yet.
As we were waiting the two ladies sat behind us started to talk, an older (although by no means elderly) lady asked the woman what she was here for and she said 'I have a disease called Ehlers Danlos syndrome. The collagen in my body is faulty so my knees dislocate. It's hard because I have a 7 year old son and one day I am fine and the next day I can't move and am in agony. People look at me and don't get it because it's an invisible disease and I look so well." The older lady (who was on crutches and wearing wrist supports on both sides) explained that she is in agony all the time but the doctors won't diagnose her. Her knees dislocate frequently and she often falls, sometimes having to wait hours for her teenage children to get home from school, she explained how frustrated she was and nothing they did worked. 'The doctors won't listen' she said.
I had my 'My joints go out more then I do' hoody with me so I turned around and without saying anything held it up which made them both laugh. It sounds awful but it was so nice to sit and listen to these women talking. There are times with HMS that it is so painful and so diverse that I think it must be in my head.
Once again Chloe in this blog you have proved that you have the attitude and dignity to get you through this torment because you have the added ingredient....a sense of humour. Every word you write is helping your fellow sufferers and as soon as you have the time to sit out there in the early dawn with your laptop at the ready you must get the book written! It looks as if not just the patients but also the doctors and researchers need it.....and remember this as soon as the papers and magazines realise there's a young mum here they will want your story. You are going through all this now as a pioneer to blast away the fright and ignorance of so many and to reward your man and your daughter for all that they have been through with you. We readers salute you Chloe and pray for even more strength to get this monster licked. Love from Pete.
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