Month: March 2017

The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together.ย Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

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Opioid Withdrawal

As you are all aware, I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) and with that, comes a great deal of physical (and mental!) pain. 

Pain rules my life and I have to live around it; I have spent many years trying many different pain medications with varying results.

When I came back from a three week pain rehab programme, I asked my GP to prescribe Fentanyl Patches. He agreed and I went away with a script for 12.5mcg (micrograms) and that’s where it all started. 

I have been a regular codeine taker and it works well for me. I have never felt the need to take it, I only took it when I needed it for pain – so I was not addicted. 

However, when using Fentanyl I quickly found that the 12.5mcg patch lost its effectiveness after only a few weeks and I titrated up to 25mcg. 

25mcg in the grand scheme of things isn’t a massive dose. Yes, Fentanyl is 3 times stronger than Morphine but it’s still a relatively low dose. I was replacing my 25mcg patches every 72 hours and plodded along for a good 8 months. For around the last 6 months I have been dealing with hot flushes as a side effect of the Fentanyl and it became unbearable. 

I needed to come off the Fentanyl and find an alternative painkiller. Little did I know that I had become tolerant to the medication so having weaned myself quickly from 25mcg to a 12mcg patch and then cold turkey, I started the long, painful and exhausting journey of withdrawal. 

I am 5 days into full on opioid withdrawal and it’s hell on Earth. I have suffered with insomnia, cold sweats, restless leg syndrome, shivering, sneezing, coughing, diarrhoea, stomach pain, anxiety and fatigue. 

The absolute worst time is at night when trying to sleep. I have gone through every single pair of pyjamas I own and they were all soaked through. I’ve had to change my bedding several times. I have slept roughly 3 hours the first night, 4 hours the second night, 3 hours the third night and so on. 

I have read so much on withdrawal methods and I decided not to go down the Benadryl route (for the sweats and chills) as it is known to make restless legs worse in some people – and I’ve had enough stress to deal with.

I’ve just got back from seeing my GP who has given me a script for Beta Blockers, to help calm the anxiety and the night sweats. When your body needs to heal, it needs sleep – and if you’re dithering and sweating, you’re not sleeping well and you’re not healing; so I’m looking forward to a small amount of respite and hopefully more than a few hours sleep interrupted by having to strip off my sodden pyjamas and sleep naked (which I hate!). 

As with most things in life; it’s a process. I’m stubborn and I’ve taken the ‘fuck it’ route and gone pretty much cold turkey after just a week of weaning. I wanted to get it over and done with. I’ve got what I asked for and I’m paying for it. 

So, yeah, that’s a brief description of my latest health problems. This is just another part of chronic illness that people just don’t hear about. I hope it reaches someone who has judged another without knowing all the facts.