It’s been a while since I posted

It had been a while since I posted, I have been focusing hard on recovering from the recent double cervical fusion and getting back to work.

I am back at work starting an 8 week rehabilitation; I do 1 days worth of hours split over 5 days for 2 weeks, then increase a day a week and so on. I should be back in work full time by w/c 8/10/18.

It has been hard, I am fatigued, found it hard to concentrate at work and I still cannot get out of bed early. I have a nerve pain issue in my left arm which started a couple weeks ago. This is causing permanent pain with unbearable spasms. I have weakness in my fingers and hand too. I am back at the hospital next week to try to find out why this started 3 months after my latest surgery. This pain is multiple times worse than before the surgery. My consultant says this is NOT normal. It could be permanent nerve damage (but this would have started earlier), maybe something has migrated in my neck or one of my other discs above or below the double fusion is affecting my nerves (I bloody hope not!), or I’ve done something to flare it up (not that I know of).

Since the operation my fatigue has improved, in fact a range of my fibro symptoms seem to have improved. This is the conclusion from a study here…….The surgical treatment of cervical myelopathy due to spinal cord or caudal brainstem compression in patients carrying the diagnosis of fibromyalgia can result in a significant improvement in a wide array of symptoms. Minimizing those symptoms translates into a measurable improvement in quality of life. A detailed neurological examination should be incorporated into the evaluation of every patient considered to have fibromyalgia. The finding of cervical myelopathy warrants radiological investigation to exclude a treatable cause. More intriguing, in view of these results, is the possibility that, in some patients, cervical myelopathy may be the underlying cause of the fibromyalgia syndrome. Here is the full study here

My fatigue, cognitive issues, headaches, overall skin sensitivity (pain when being touched by anything including clothes), muscle aches and headaches have all reduced significantly.

This is amazing and I thought impossible, but studies have proved this can be the case.

Now I just need to find out what’s wrong with this sudden nerve pain and weakness in my left arm, hand and fingers and hope I don’t need revision surgery. Hopefully this is nothing nasty and will settle.

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What went wrong?

I was having a great recovery; pain was under control I was walking 3 times a day, managing a little bit of housework. Now here I am struggling to sleep, struggling with pain, unable to cook a decent meal, not been for a walk in days. Had 2 migraines over last 3 days…….

So what went wrong; entertaining a guest at the weekend, I don’t have the energy. Changed pain relief due to pressure from my doctors from Oxy to morphine, but I cannot sleep on morphine, so I switched to tramadol in the day and Oramorph at night, but it’s not strong enough. Once the morphine had worn off and it was just tramadol in the day, I went downhill fast. This is the worst I’ve felt since the surgery.

My hot tub pump has broke so I’m waiting for that to be fixed, this has made a big difference to my pain, so my daughter is running me a hot bath, where there is a will there is a way.

Doctors are so obsessed about reducing opioids/opiates, that for those of us that need them we have to fight tooth and nail to get them. I took the time to explain to the doctor step by step what they did on my neck and lower back and that my spine is aged 25 years older than my actual age, sometimes you just have to take the time to explain your personal situation to them, my 2nd double fusion was not a standard operation, my neck had to be broken in 2 places, my facet joint had to be removed as it was full of bone spurs, that’s before inserting the cage and implants. With having fibro; the pain is real, yes it is more intense and will probably last twice as long as someone without it. But I cannot change that, what I need right now are the right painkillers to ensure I get a decent quality of life and get back to my job. I cannot imagine trying to work right now………..

So I am waiting for them to ring back and I am telling them that I am going back on Oxy (I have about 2 weeks worth left) and they had better support me, or I’ll be leaving work and living off the state.

Rant over!!

Working with Fibromyalgia 

Let’s be honest life does get much more difficult with Fibromyalgia and it’s hard for people to understand how it feels to have this condition.  I’ve had spinal issues for ten years and had chronic intermittent pain for 6 of those and permanently for the rest.  But I never ever imagined that I could feel so ill all of the time.  

It is only since I started mindfulness meditation that I realised that the pain is not constant, it changes and there are brief moments that I don’t feel any pain.  I do also believe that because our brains and bodies have increased pain sensitivity that we are used to feeling it therefore our brains and nervous systems continue to ramp up the pain.  When I meditate I focus on the areas that hurt the most, which is mostly where I have my fusion.  I slow down my breathing and focus on the area of pain and the area around it and I realise it’s not constant but changeable and I focus on what colours it reminds me of and what shape and contour the areas are.   We are often told by our doctors to ignore the pain and try to keep busy, I find this just stresses me out as I end up only focusing on the pain.  I find by using meditation to focus on the area and acknowledge the pain, making friends with it, realising it’s not constant I feel so relaxed, you can read more here.

Anyway let’s discuss working, some days I often wonder why the hell I put myself through the stress but I’d rather have a reason to get up than be at home depressed and worrying about my body hurting.  My job is very stressful, working with extremely challenging stakeholders and trying to manage my time to work within my limits.  I have had to toughen up and learn to pushback and say no, people constantly try to book long meetings, want me to travel to London (5 hour round trip) for something that could be done over the phone/screen share. There’s an expectation to always be online and work long days constantly attached to your desk, work through lunches and attend lots of meetings,which dramatically reduces productive time to do any actual work.  Meetings are also booked back to back so you end up running from one place to the next and always being late.  
Do not be afraid to speak up about changing your work environment and ways of working.  Here are some of the changes I’ve made to my working week:-

  • Don’t work excessive hours, listen to your body, my fatigue generally takes 48 hours to kick in.
  • Block out lunch breaks, what’s your contracted minimum lunch break?
  • Set your calendar so people know what hours you work.
  • Eat lunch away from your desk, unless you go for a walk at lunch!
  • Don’t be afraid to say no, not everyone’s priority is your priority, negotiate on deadlines.
  • Block out time in your diary to do actual work with a no meetings clause.
  • Switch off your phone and email when working on something to reduce distraction.
  • Book out meeting rooms or ask to work from home when you need quiet time to get stuff done.
  • Make action lists so you don’t miss any deadlines.
  • Don’t stress about things you can’t control, speak to a friendly face and share your concerns, you’d be surprised how helpful someone else can be when they look in from the outside.
  • Book meetings for 25 or 55 minutes giving you time to get to the next meeting and grab a drink or nip to the loo.
  • Make sure you take a healthy lunch and water with you as you need to eat to stay focused.
  • Make sure people factor in breaks to long meetings and especially lunch breaks as you need to rest and eat.
  • Keep weekend work to a minimum don’t let it become the norm.
  • Don’t just say yes to travel, always challenge the need for a face to face meeting, can’t it be done by phone/video conference or a screen share?
  • Have a rule of no meetings till X time, to give yourself time to prepare in a morning.
  • Have a rule of no meetings after X time to allow yourself a reasonable finish time.
  • Work from different positions, could you get a hydraulic desk, I have one and it really does help my back.
  • Block out time before and after meetings to prep or write them up to ensure you stay on top of things.

These are just some of the things I have put in place and I always find that if you’re honest with people and explain why you do the things the way you do, most people are reasonable and understanding.  The ones that aren’t you may have to enlist the help of your colleagues or just stick to your guns.

You are no good to anyone if you end up going off sick.  Many times in the past I’ve pushed myself too much and caused a flare up, now I have learnt the warning signs and I’ve even cancelled meetings as I haven’t felt well, explaining that if I don’t I’ll be off work.  

If you feel you aren’t getting the support you need maybe it’s time to have an honest chat with your boss about your condition or maybe look for another job.  I recently moved out of my old role which I loved as I couldn’t do it anymore, the expectation of being out on the road constantly was impossible.

Put yourself first always even if at first it feels uncomfortable, which it probably will as I know I did. 😉.  You can read more about working with Fibromyalgia here 

Travelling at work. Massive fail

Well I’m sat on the train on my way back from London.  It’s a 2 hour train ride and a 15 minute bus journey to the 2 London offices.  It’s only Tramadol that’s took the pain levels from 8/10 to a 6/10.  My whole lower spine, upper back and shoulders (where I had my rucksack) right hip, groin and leg are hurting real bad.  I also feel like I have flu as I have that achy feeling all over.  I felt my stress levels increase as I sat in the train as I was in so much pain, I also felt the stress increase the pain in my back.

Mindfulness has taught me to concentrate on the ‘now’ I mean this will pass, just let the negative thoughts come and go and scan my body and surroundings and enjoy the moment.

I undertook 2 mindfulness sessions on my headspace app as it doesn’t need Internet access so dodgy train signals won’t disturb me and my stress levels have reduced.  The Tramadol has took the edge off the pain and I’m enjoying writing this blog, looking at the sunshine and the fact my dad is collecting me in an hour with my daughter and hopefully my mum.

Tonight will consist of rest, heat and my daughter will warm up my food my husband has left me already cooked in the fridge as he is working away.

What this experience has taught me is that I am not yet strong enough to travel to London but 4 months ago I did not have the strength to even contemplate it.

So when you have a bad day remember how far you’ve come and let it guide you to where you’ll be in another 4 months.