There must be something about the un godly hours of the morning that make me want to write.
1.09am: and I am wide awake.
So I’ve not really told you have I what actually happened recently? As in last week…the week before…
Well, hold that thought, I need a brew.
That didn’t go to plan, ended up convincing myself to go to sleep and the next moment it’s 7.00am!
So. What happened.
A relapse. A relapse happened.
It’s like ripping off a plaster, done. Said it.
But WHAT HAPPENED?
Pain. Pain happened. Pain is nothing “to be scoffed at”-imagine you have this pain that is so in describable, so deep, all you can think about is how much you are in pain, what it feels like, which pain killer to take. To rest, to keep moving, to sit, to stand, legs up, leg down. Lie down, sit up. Stay still, move around
Can you see a pattern here?
Literally getting to the point where your normal aches and pains do not compare, that this pain is SO STRONG you actually cannot be arsed to do anything.
That suddenly you realise slowly that you become more and more less bothered about looking “nice”, that comfort is paramount and suddenly a lot of happiness in the world seems to dissapear.
I found myself getting tearful, for almost it felt for no reason. That I felt unhappy, depressed I guess all of a sudden. Don’t get me wrong, my mental health with stress and depression has not always been peachy, but the last 4 years I have felt mentally good!-well! I started to google NHS depression and considered counselling and speaking to my G.P about anti depressents (I took 1 tablet 5 years ago!-so this is not “normal” for me).
I started to consider ringing for help to let some of these feelings go, over a space of a week, I never felt so unlike myself.
C and J were a constant support, I just couldn’t put my finger on what was wrong with me.
I started having terrible flash backs of my time in the QMC from 2014 (I must stress this is NOTHING TO DO WITH THEIR AMAZING STAFF AND CARE), I just kept playing over the trauma of it all, lying in bed on a catheter not being able to move, the same conversations with doctors like a stuck record going round and round in my head.
I started to accept that maybe I had had a good run, and I was to be stuck like this. In terrible bursitis pain in my hips, struggling to walk accross the playground with J,hair scragged up, hoody on, trying not to use a stick but eventually giving in to that. Pharyngitis perhaps causing a pseudo relapse, feeling really cold.
That hypermobility really was causing all this, pushing myself to do physio excercises (several of 3 times a day) to strengthen weak muscles in my hips, knees, back, feet, stretching out tight thigh and calf muscles. Anything I could do to help myself I was.
Out when Converse, in came Nike and insoles with arch supports.
Waking up in the morning and having almost cramp down both legs-my toes springing backwards with force weather I wanted them to or not. Legs springing out and stretching
Wobbling to our ensuite wondering if I would make it to the loo without falling.
“I think I ought to go and get checked out”-what a waste of time. Two local hospitals later, some blood tests, and a box of codeine and plenty of tears “it’s just muscular”-yeah see your G.P they can refer you, and yeah speak to your neuro when you see him.
Great. Thanks. I was convinced I was not attacking, and a check up with neuro he also agreed. So off I went to costa with my dad at QMC, feeling relieved (which helped).
So…the box of codeine being prescribed locally at a hospital was a week after that.
When I saw my neuro, I was mobilising with a stick, I could stand on tip toes and had started oddly to feel a bit better.
The box of codeine situation….1 week later…I could barely transfer from my car as a passenger to a wheel chair.
The soreness of nerve pain all over my legs if they touched anything too my breath away.
That weekend, I had started to have banding, that is like a tight squeeze around your chest and ribs. I suddenly realised my right foot was dropping, my toes were going, and I couldn’t lift my right foot.
“help!”-Dr.C acted fast. He listened and reffered me immediatley to the QMC and got hold if Dr.G and his team.
This sense of relief was amazing as well as being scared.
“mummy might not be here after school sweetheart, I need to go to hospital to get some special medicine to make me better, and have a sleepover there”. “ok!” I might have a special photograph of my spine too like an X-ray but called an MRI-bring me your body book and I will show you which part of mummy is poorly”.
J found this quite interesting being 6 and how mummy would have her medicine and would I need my p.js.
J went happily off to school then the call came, I was going in. C had acted fast getting a wheelchair the night before, have I mentioned how amazing he is?
By this point the pain was so bad and weakness was setting in, my mum came who was also amazing and calmly we set off, a big bag of stuff to last at least a couple of days. I knew I needed I.V steroids and that was fine.
Chris heaved me along in the wheelchair I felt like a dead weight.
In. Bloods. Food.
Dr. A came, “yep this is a relapse we thought it probably was when we spoke on the phone”-toes curling back-classic sign.
The sense of calmness was amazing.
“ooh you’re having a little picnic are ya? hi”- “Hi Dr.G”- the big smile beaming back from him.
“right, I.V 3-5 days of pred then oral” yep relapse.We need to treat you.
“Toodle ooo” and off he want calm as anything with his trolley of stuff.
Ok, next minute I.V was in, bladder still working, all calm to be admitted. That was that really.
The next morning I woke up n realised my toes had come back, 5 days later of I.V I was mobilising with support and some normal movements were coming back.
1 MRI later…the next day….showed a big fluid leison on my spinal cord which was the NMO relapse causing all the weakness and ridiculous pain.
I realised I also felt….like…Jane….I was no longer depressed, in agony, I felt….light……
That night (5th night in) I got transffered to a ward from MAU type ward.
I was lucky-own room, shower next too it n loo opposite. Peace n quiet.
“I want to go home discharge was written for Sunday”-errrmmm. More neurological input needed-right ok….and physio said they would see me too-hmm. I won’t go into that now but I was not impressed with being offered a zimmer when I could walk with a stick more comfortably.
“ok yes you can go home”-oh thank god.
Miles away from home and I had been so lucky with one of my best friends visiting, mum dad chris and J too, friends, countless messages and phone calls, facebook comments.
“Tada!”- “Mum!” I cried and cried.
Sat crossed legged on the hospital bed, I don’t know how I didn’t pull her over on top of me. I am 6ft and she is 5 ft 3.
Now I can’t see to type because my eyes keep filling up!
And off we went, nurse in tow pushing the hospital wheelchair.
Down a lot of corridors, outside. “huhhhhhhh”-fresh air and christmas lights in the darkness.
Snap. Off came the hospital wrist band, and out came a few tears of relief.
Back to mum n dads I went, Chris on the phone.
“I am out”-“Yayyy excellent”-I am going home to mum n dads” “fantastic see you later, love you” “love you too”.
I frantically text my sister “I am out going to mum n dads”-“fantastic!!!”. “Can’t wait to see you at christmas!”.
Christmas had been mentioned that I might not had been out for-well-that was never going to happen was it?.
Cup of tea, feet up.
Mum, dad, Chris and James