I dont want to sleep...

In the last eight years I have had nothing but pain and exhaustion. If you have seen me out and about smiling, I was either smiling through the pain or smiling through the agony of exhaustion and fatigue. There is a third option that I was taking a super little pill called prednisolone which gives me pain relief and an artificial sense of energy that I run around burning off until I was even more exhausted that before!   However after eight years this pain and exhaustion had sadly  become the norm.  I didn’t realise I’d been walking this balancing act for years until something changed and I got both pain relief and energy at once.

In the space of a couple of weeks my Neurologist managed to put two of my headache disorders into remission and I was diagnosed with Addison’s disease which sounds bad ( and is quite bad) but the treatment I was given made me feel better than I had in ages.

My very painful Cluster headaches are isolated (mostly) to the night time hours. So in the absence of my other two headache disorders I had some pain free time during the day. Add to this some genuine energy too. Wow, both… at the same time… what a unique feeling!

I got into a really set routine, the attacks started at 9:30pm and I ventured off to bed at midnight for a few hours of pain and 02 till the attacks subsided at around 5 am.  We estimate about 30-90 minutes sleep a night intertwined with my attacks. But at 5 am when they stopped I bounced out of bed and I didn’t stop until it was pain time again!

For a month I did this… I survived on very little sleep but I was having lots of fun and being a productive member of my household.

Everyone told me to slow down a bit, I didn’t need to go from 0 -100mph at once. But why would I rest…. Seriously I can be normal for a few hours a day, why would I choose to rest!?!?

I knew it wasn’t healthy, I knew on some level I was getting exhausted but there was no way I was going to give up my new found freedom to sleep.

When my lovely wife got sick with a bad virus I ran around all week taking care of her. I was so proud of myself. I was finally getting to look after her and do it well.

However it was on my birthday that I realised that this was all about to backfire on me. As we spent a lovely family day walking around Trentham Gardens (look it up my UK friends, its lovely) in the sunshine I was freezing! Within 24 hours I had full blown flu. I NEVER get the flu, it turned into a chest infection and inevitably the cluster headaches decided that they were going to play havoc with my daytime and my night-time.

I hadn’t really recovered from this 3 weeks of viruses when I was admitted to hospital with what now looks like an extension of the cluster headache, but at the time was unexplained loss of sensation. But it scared me… not much scares me anymore, I can’t afford to waste time and energy worrying about my health. It takes up enough of my time living with it let alone worrying about it too.

I wondered briefly about why my cluster headaches had introduced something new to the challenge right now; but sat in a hospital bed all night on your own you have a lot of time to think, and the answer seems obvious…to me at least.

I had been really ill with my cluster headaches for 6 months, worse than normal. I’d had very little sleep in that time too and was fighting a huge battle every day with the number of attack’s I was living with (up to 20 clusters a day with Paroxysmal hemicrania and hemicrania continua on the attack too). Then I had the life changing month of serial multiple cranial nerve blocks and Addison’s diagnosis and my life changed for the better… but I never allowed myself to recover from the months of cluster headache assault on my body before I tried to live life at 100 miles an hour.

 I’m exhausted, physically exhausted.

But how do I take control now that I’m settling into my new normal, whatever cluster headaches has in store for me now.

I was adamant that the reason I wasn’t sleeping was physical, because I had too much energy and couldn’t sit still… but on reflection I was kidding myself. I didn’t want to sleep, I wanted to live…. I wanted to be alive while I can.

Imagine being given this new access to a life without pain or exhaustion and deciding to take an hour to sleep!

But I have to… I know that now… I just don’t know if I can.

We, as a group of chronic sufferers talk a lot about this balance. Making the most of your ‘well time’ but not making things worse for you by overdoing it.

It’s a case of accepting the chronic diagnosis as something that will be part of your life EVERY day regardless of the number of attacks you experience . Even when you feel well you have to remember that you are ill.

That’s the hard bit… In that 4 weeks I had conversations that were not about cluster headaches. Even shell and I didn’t talk about it for weeks at a time. I was living a life that didn’t revolve around it. It was genuinely bliss.

Now… well now it’s the centre of my world again as I try and get stronger. This is much more of a psychological battle than a physical one. There is a lot of work to do with both, but unless I try and rest and relax I won’t get strong enough to face what cluster headache has in store for me.

My life with cluster headaches is not what I want. It never will be what I want for my life, but I need to take some time to re-evaluate what makes me happy, what I want and what I need. I need to work out how to get it too, how to get what makes me happy in a life that includes Cluster headaches.

So for now its fun and excitement in moderation and rest and relaxation on prescription.

Why don’t the NHS do holiday’s to Tuscany on prescription… I bet I could relax and rest there!