Tag Archives: Ehlers-Danlos Support UK

A Day with Ehlers-Danlos Syndrome : Part 2 (A Bad Day)

I’ve been awake for a while and aware that it’s going to be a bad day. My head is pounding, I feel horribly sick and it feels as though my body’s been hollowed out, filled with petrol and set alight – nasty, burning pain all over. I’m stiff and uncomfortable so I’d really like to turn over, but I know that will only bring on the sickening lurch of a pre-faint so I lie still. Eventually, my electronic pill box sounds and I reluctantly open my eyes. The room is spinning and my eyes seem filled with wriggly lights (I don’t know how else to describe it). I manage to lift my head enough to take the pills and then collapse back on to my pillow. It’s too soon after taking the pills so now I have heartburn. After a few minutes I realise I really need the loo. I carefully pull myself into a sitting position using the rail by my bed and groan as the nausea becomes more intense and the room spins with increased vigour. My bladder is growing more urgent so I pull myself up into a stand. Massive mistake: my knees buckle and I hit the floor. After a couple of minutes I manage to muster the energy to slowly slide to the bedside table and press the alarm call. The safest thing would be to wait where I am, but then my Mum would have to clear up a puddle and goodness only knows she has enough to do already, so I start to slither towards the bathroom. I can’t crawl because my wrists, elbows and shoulders give way too easily. I’m about half-way there when I hear my mum’s key in the door; she’s responding to the alarm. She helps me up and takes most of my weight as I shuffle slowly and clumsily to the bathroom. To me, everything seems hyper-real and yet curiously unreal, as though I’m really far away. Mum helps me on and off the toilet seat and holds me steady as I wash my hands. I’m past worrying about my dignity after all these years! She helps me back to bed. By this time, I’m talking nonsense and occasionally laughing for no reason. My floppy blood vessels mean there’s not enough blood in my brain so I can’t function normally. It feels like the functioning part of my brain is locked away in a cell, screaming to be let out. It’s scary and disconcerting. I drift off to sleep. Mum will take my daughter to school. At least I know she’s safe.

 

My mum comes in a couple of hours later and holds the cup to my lips so I can drink. Can I manage a shower? I’m desperate to get washed and dressed but it feels so daunting. Mum helps me to the shower and washes my hair. The water feels good. Mum helps me out. I manage to dry myself but dressing is beyond me. It’ll be a pyjama day. I manage the top but Mum has to put the trousers on me; leaning forward makes me reel. The effort of showering has exhausted me, but I’m sick of being in bed so Mum supports me as I shuffle slowly to the living room and the sofa. She makes sure I have plenty to drink, the phone, my walking stick and the alarm call button. She makes me some toast. I feel too sick to eat but I try. The food gives me some energy but my stomach aches; there’s not enough blood there to process what I’ve eaten. I try to watch TV but it seems so loud and bright that I feel I might explode. I switch off the TV and doze.

 
I wake with a start. What’s the time? By now it’s almost lunchtime and I realise I’m going to have to start making calls to cancel the plans I had for the afternoon. An appointment, a meeting, a coffee date – I hate having to flake. I call and explain I’m too ill to make it today. I talk slowly and it’s hard work. I’m tripping over my words, using the wrong word in the wrong place, slurring and stammering. I’m grateful I’ve taken the time to explain to the people in my life on the good days what a bad day can be like; strangers just think I’m drunk. I hang up, exhausted again and decide to shuffle back to bed. I call my parents first so that they know what’s going on. They confirm they’ll collect my daughter from school. I collapse into bed, barely strong enough to pull up the covers after the effort of moving from the living room to the bedroom.
 
It’s 3.30 pm and my Mum brings my daughter to see me. She hardly bats an eyelid at the state I’m in; she’s used to Mummy having days like this a couple of times a week.She tells me about her day and we hug. Then she goes back with my Mum to have her dinner and a bath. She’ll have to sleep there too. 
 
I’m stiff from lying still for so long so I decide to potter about the house a bit. After a couple of minutes I’m short of breath and so it’s back to the sofa until my husband arrives home from work to cook a meal I’m too tired to eat – using cutlery (even adapted) and chewing is surprisingly hard work.
 
At 8.30 pm my husband helps me into bed. Despite resting all day I’m still exhausted and in significant pain. As I fall asleep I hope to have a couple of good days before my next bad one.
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A Day with Ehlers-Danlos Syndrome Part 1

I didn’t even hear my husband’s alarm go off this morning but I’ve woken up now my electronic pill box has sounded at 7.00. Groggily, I tip the pills into my hand and take them. The little white one is to help my body process whatever I decide to eat for breakfast and the orange one is to raise my blood pressure enough so that I can get up without falling over. I go back to sleep.
It’s 7.50 now and my alarm has just gone off. The meds have worked so I get up slowly, sitting on the edge of the bed for a few minutes until the room stops spinning. I walk wobbily to the bathroom to use the loo and brush my teeth.
At 8.04 there’s a knock at the door – my carer’s arrived. She helps me into the shower and then opens the curtains and puts away clean laundry until I’m ready to get out. I call for her help and she supports me as I rise from my shower seat and back to the bedroom. I’m able to dry and dress myself independently today which is great.
It’s 8.35 so go to collect my daughter from my parents’ house next door where they’ve been getting her ready for school. I can manage the walk to and from school today but I’m still very sore and tired by the time I get home. I’m feeling too nauseous for breakfast so I just sip water before setting off for the facial I’ve been looking forward to, thanks to a voucher I received as a gift! The facial is lovely, but it’s hard to enjoy it as by now my feet are burning and I’m starving from missing breakfast! I come out of the spa and buy a sausage roll before driving home.
Once home, I settle down to work for a couple of hours. My carer arrives at lunchtime but I’m not hungry (due to the sausage roll!) She hangs out the washing and washes the dishes for me.
Next it’s into town to do some shopping. I park at the supermarket first and then drive to the centre of town. Having completed most of my shopping I have to leave visiting the chemist as I’m too tired to walk there and I worry I might not make it to my physio appointment if I attempt it.
The physio puts me back together – my pelvis, rib cage and jaw are all out of alignment and my muscles are stiff and painful. I feel much better after the treatment and the physio comments on my improved colour!
I head home and have half an hour to work before I go to collect my daughter from school. I’m tired and my feet are still burning but I’m 80% confident I can manage the walk there and back nevertheless so I set off. Arriving in the playground I have to sit down as I’m really beginning to flag. I chat with a friend until the children come out.
It’s a Wednesday, which is when my daughter stays at my parents’ place overnight. She wants to go there straight away to play so I drop her off and say goodbye.
At home, I feel I should take the opportunity for a nap but decide I have too much work to do so I get on with that. At 6.00 my carer arrives and helps me into my pyjamas as well as closing all the curtains and bringing in the washing.
At 08.00, my husband returns from work and stir fries loads of veggies and I tuck in hungrily using my foam-handled Nelson knife (using a normal knife causes my wrist to partially dislocate and or sprain).
I start to feel spaced out and a bit vague so my husband helps me into bed. I lie there for a bit feeling ‘unreal’ and compulsively repeating the same meaningless phrase (my brain is lacking in blood flow) until gradually my circulation settles and I fall asleep.
This was a good day.

Voluntary work saved my career – and my sanity

I was just 14 years old when I decided, having seen a documentary about rehabilitation and head injury, that I wanted to be a Speech and Language Therapist. Every educational decision, from that point, I made with this goal in mind; my GCSE and A-Level options, my work experience choices and of course my University application. In 2001, I graduated with a BSc in Speech Sciences and a licence to practice Speech and Language Therapy. In those days, there were plenty of vacancies for SLTs and it was not difficult to find a job. I wanted to work in London to be near my boyfriend (now my husband) and I applied for and was offered a post in a vibrant and exciting part of London with a fascinating and diverse paediatric caseload and a friendly and supportive team. And I LOVED it. I was doing the work I adored, with these amazing kids and their families and the most fantastic, inspiring colleagues. I was stressed and overworked but it was as though I breathed Speech and Language Therapy and there was never a dull moment. When I became ill, my managers and colleagues were super-supportive and, although they and I had to make many adaptations to enable me to continue to work, I took enormous comfort from the fact that I could still make a difference and add value to the team.

In 2011, things changed both within the organisation and the wider economic and political landscape. My immediate managers and colleagues remained supportive, and I had the backing of the Occupational Health Department, but I was put under increasing pressure to improve my sickness record – something which I could not do. Not only did this inevitably have a negative affect on my already fragile physical health, but the depression I had been managing for many years reared its ugly head once more and I became consumed by terror. My overriding fear was of losing my career. Of course, the financial implications were huge, but more than that I was scared of losing such an important part of myself, my sense of self-worth and identity. Who was I, if not a Speech and Language Therapist? I didn’t know how to be anything else.

With all of this going on, it also became apparent that my level of functioning was now so low that I required 24-hour care which my husband was unable to provide whilst also working a full-time job and taking care of our daughter. With heavy hearts, we put our flat on the market and moved in with my parents miles away.

Shortly after this, I was forced to apply for retirement on medical grounds. This was granted in November 2012. It seemed that, just 11 years in, my dream career was over and a part of myself was gone forever.

At around this time, with a vague idea of ‘becoming more involved in our new community’, my husband and I went to the Annual General Meeting of the local Playgroup (which our daughter was now attending). We hadn’t known what to expect, but found ourselves responsible for reviewing and updating the Playgroup’s policies. I came away from the meeting with the pleasant feeling of being useful again – maybe there was something helpful I could do after all. Over the next few months I enjoyed this activity. I liked having a work-related purpose, going to meetings and getting to know my fellow committee members. Gradually, my husband was less involved in the role as I took on more and more and my confidence grew. I kept careful records of what I was learning and gained enormous satisfaction from recognising how many of my SLT skills were relevant here. In September 2013, I put myself forward as Chairperson of the committee and was duly elected.

Since then I have also volunteered as a reading-helper at the local school and held fundraising events with friends in aid of Ehlers-Danlos Support UK.

And the very best news? Thanks to working so prominently in the local community I have been asked by the school to carry out voluntary work as a Speech and Language Therapist! So, from September, I will be returning to the career that I love. Not in quite the same way of course, but I am thrilled to be regaining a part of myself I thought was lost. And I’ve found a whole load more parts of myself that I didn’t even know existed.

mef