Can’t sleep pre surgery

I thought I’d cut the pain pills down to help with post surgery pain but, what an idiot!! I’ve been in agony for the past 3 days. I did not realise just how much pain in was in where I was fused before, my neck (current collapsed discs) and where I’d fractured my knee.

Now I’m not an idiot I know damn well if I didn’t have fibro, none of my pain would be this bad!! It amplifies all pain, even making non painful things painful, such as touch and even the wind blowing the hairs on your body. Yep this is true, during a flare up.

I am well into flare up territory due to high stress levels. Knowing just how that last fusion not only stopped from being in a wheelchair, but also caused me to develop fibro, which is just one of the most annoying conditions ever.

Anyway, I keep telling myself it’s not cancer, I won’t die, it’s not progressive, focus on the good not the bad.

Up in 5 1/2 hours, do best try to sleep!! Speak later all!

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‘Normal’ people don’t get it!!

It’s hard to explain to people just how draining it is to have fibromyalgia. Unless they have had the flu they cannot imagine a flare up. Unless they have had a hangover or a viral infection for months on end, they cannot imagine how we feel every day.

Mornings are the worst; the headache, unable to open my eyes, muscle aches so extreme that for a brief moment I wish I hadn’t woken up at all. The fatigue; it’s like you’ve slept for only a couple of hours at most. Then when you do get up, I can’t stand long enough to do my make-up, hair or anything else. If I couldn’t work from home every afternoon I would have to resign from work.

I’d love nothing more than to ride my motorbike to work, but I don’t have the energy to get changed twice before work, then again after work to get home.

When I finish work, some days I don’t eat as I don’t feel well enough to cook, I can’t stand long enough or cannot face doing the dishes as too tired. I can’t go out anywhere or do anything at night as I struggle to function, working has zapped all my energy.

I’m ashamed to admit it but when I’ve had a bad flare up I have not even been able to bathe for up to a week, sometimes not being able to get out of bed.

People say oh yeah they are tired too. But this isn’t about being tired……fatigue is extreme, it’s painful in the muscles even and it’s very hard on your mental health.

I never in a million years imagined feeling so ill for so long. Getting a simple cold that can knock me off my feet for a week, unable to look after myself. Never mind give any attention to family or friends.

I have sunk so low in the past I’m ashamed to say that I wanted to die, as I could never imagine living like this for the rest of my life. Not just the fibro, but having 4 collapsed discs, one removed and fused (which is how I developed fibro in the first place), now my spinal column is being crushed by 2 of my neck discs and crumbling facet joints, it’s excruciating.

Life can be cruel, but life is also beautiful. I used to take so many things for granted. Now I have learnt to get joy from the simple things in life. Friends that were toxic I let go, I have passed on some of my household duties to members of my family. I pay people to do jobs around the home I used to do myself. I’ve also bought my dream car and motorbike as I know I will most probably end up not being able to use either; as I get older.

You see, life goes so quickly and I realised I cannot spend any more time being sad and depressed. I needed to change and educate the people around me. If these people cannot accept the way I now or how I have to live, then I will let them go, no matter who they are!

I console myself by the fact I am not going to die, I don’t have cancer and there’s always people out there worse than me. Life is amazing and even with fibromyalgia and my spinal issues I can enjoy my time on this Earth.

You have to dig deep into your soul and move into acceptance, move out of the ‘why me?’. There is always a reason why we develop fibro; illness, chronic disease, car accident, spinal issues, viral infection, mental health issue, the list goes on and on. It’s not always easy to figure out the reason why, but when you do you realise it’s not your fault. Why do some people get illnesses and others don’t?

Life is too short to torture yourself, yes I still get bad days when I cry, but most of the time I feel happy. No matter how much pain I am in, no matter how fatigued I am. Life is going by so quickly, don’t spend it feeling sad, so less of the things that make you ill and more of the things that make you smile. Get rid of the people that make you feel worse and surround yourself with positive people.

Anxiety, Depression and Fibromyalgia 

Apart from fatigue anxiety is second on my worst symptom list, certain activities make it worse and I think I’ve finally figured out why, from my personal experiences.  When I am getting ready to go out, see family, go out for a meal or whatever we obviously have emotions of maybe anticipation or excitement etc and think with over fibromyalgia our over stimulated nervous system confuses these feelings and we internally confuse these feeling into feelings of anxiety.  I get panicky, breathless, heart racing and anxious.  Once you recognise this pattern it can be controlled.  Don’t let these feelings stop you from going out and living, it may feel easier just not to go out but then we are giving in to this condition.  Recognising the symptoms, learn not to fight it, but use relaxation techniques and deep breathing helps. 

What I have also noticed is that the sensory over load from loud music and busy places can also cause anxiety.  I had to run out of a friends house the other week as the music was too loud.  

I tend to use ear plugs now that are especially made for noise reduction.  You can still hear conversations but it cuts out the bass and loudness. 


Depression is a part of fibromyalgia caused by the loss of your previous pre-fibromyalgia life, loss of friends, suffering constant pain, stiffness, anxiety, itching, skin sensitivity, food and chemical sensitivity.  I stopped taking anti depressants last year and thought I was coping well but it hit me like a train.  I asked the doctor to go back on them but at a reduced dosage of 20mg instead of 30mg.  I feel so much happier.  It’s well researched that a low dose of anti depressants increases serotonin and can reduce pain.  Why do you think doctors prescribe Amitrypyline for pain relief at night.  I don’t use this medication as the side effects were not worth the positives of taking the medicine.  Read here for more info 


All medication cause side effects as they are designed to change how we think and feel so always weight up the positives against the negatives and make your own decisions. DO NOT TAKE MEDICATIONS JUST BECAUSE THEY ARE RECOMMENDED.  Not all doctors understand Fibromyalgia they are General Practitioners not fibro experts.  I gave up several medications last year and I can categorically state my symptoms have reduced.  It’s a personal choice so make sure you do your research and always give meds a minimum of 2 months to get the full effect. 

Citalopram and Fibromyalgia study here. 

Working with fibromyalgia

I had a particularly rough day yesterday.  I felt really negative and I seemed to slip into a dark hole.  I wasn’t expecting it but I knew something was happening which is why I opted to work from home.  It wasn’t just exhaustion!

Like an idiot I worked from my bed, it was not comfortable for long.  I woke up this morning feeling like I’d been hit around the top half of my body with a baseball bat!!  Next time I will sit at a desk and take more rests.

I had a very depressive day, I couldn’t bring myself to meditate and didn’t want to talk to anyone at all. I even went to sleep at 8.10PM on my own as my daughter was at her dads.  I did manage 6 hours sleep in the 10 hours I was in bed. Yay.

It isn’t healthy shutting ourselves away or sitting hunched up in bed all day, we must keep mobile or the stiffness sets in and boy did I feel it today.

Working with this condition is by far the hardest thing I’ve ever had to do.  The exhaustion, stiffness, aches and pains (my fusion still hurts), mental grogginess, anxiety and depression is tough.  Giving up my dream job was hard, I was do good at it, but once this condition started to get worse I couldn’t do what was expected of me.

Do you all still work?  What changes did you make to your working conditions?

Did you have to quit your job?

I won’t give up until I cannot get out of bed and I will not allow that to happen. 

So, what did I do st work to improve my symptoms:-

  • I was honest about my condition
  • I work from home when I need to
  • I book annual leave when I need a rest, I’ve learned from mindfulness and keeping diaries for pacing when I’m about to have a Fibro attack
  • I am strict about working hours
  • I will not skip lunch
  • I drink a minimum of 3 litres of water a day
  • I eat breakfast and lunch and I ensure I make my food as organic as possibly
  • Don’t eat takeaways or food on the go from the canteen unless organic
  • I do not drink any flavoured sweetened drinks
  • I only drink one coffee a day
  • I keep an action log
  • I block out activities I need to do in my diary
  • I have a hydraulic desk and specialist spinal chair
  • I gave a lightweight laptop and a tablet for travelling
  • I will not have meetings later than 3pm
  • I try not to undertake back to back meetings I try to leave a 15 minute gap between meetings
  • I have refused to travel to a meeting in London and insist on conference facilities until I feel stronger
  • I registered for a disabled parking space
  • I listen to a 10 minute mindfulness recording each lunch time
  • I fetch a drink or go for a walk each hour to stretch my legs

Read some more useful tips here 

Fibromyalgia and women

I read a great fact based article today about this condition and why it’s predominantly women who get diagnosed.  I absolutely do agree with the hormone link and why it’s again predominantly around middle age, but there are a few exceptions as there is with most conditions, ones that fall outside the ‘norm’.  Read more here

I know why I developed it, I have spinal disabilities and had major surgery on my spine to correct the twisting and collapsing of my spine.  My dad also has ankylosing spondylitis, another link to why I developed this, it’s in my genes.  I am certain if we all reflect on our family history and health we can work out why us?

This condition does not have a cure, it’s a chronic condition.  It will not kill us but it DOES have a serious detrimental effect on our quality of life.  We CAN however takes steps to improve our quality of life; keep diaries of our condition, what we eat and drink, sleep journals, activities we do, how we feel mentally and physically.  From this we can work out what is toxic and needs to be removed or reduced in our lives in order to improve our symptoms.  This IS going to be a challenge, if it was easy none of us would be suffering!

I will not give up this challenge, why? Because this is my life and I will live a good quality of life.  The best that I can.

Are you with me? Or are you prepared to give up?  Trust me I have been to hell, I’ve suffered so much pain, given up so much of my old life, landed in the gutter so many times.  

I WILL NOT GIVE UP, NOT UNTIL I AM OLD AND DEAD.  BECAUSE IF I HIVE UP I MIGHT AS WELL BE DEAD.

#fibrogoals 

Pain pain pain 

I am not going to lie, the pain is at an all time high as it feels like I’ve got the early stages of flu.  I felt rough this morning, had 2 cocodamol felt slightly better, went to the bike shop to get our new bikes and had another coffee, one more than my usual, felt great, Christ I felt high.  Then I crashed big time, I felt dreadful, exhausted and in pain.

I decided to go for a little trundle out on my new bike to learn how to use gears, I’d passed my CBT on an automatic bike.  Now the way Fibro works is every little amount of ‘stress’ which normally I’d just deal with, my head and body go into full on ‘fight’ mode, I either hold my breath or take fast small breaths, the pain starts and I feel exhausted.  I managed to deep breathe and kept it under control.


After an hour I went home exhausted and in great pain, like having the flu, especially in my lower back around where I have had it fused.  I went to bed, listened to 2 mindfulness meditation sessions, ate a chicken snack, used a hot water bottle and after an hour of being in agony I took 2 cocodamol, begrudgingly, as I do not want to rely on pain pills.

I’m sat in bed still, hoping I feel better so I can go round the block on my new bike to get used to it.  Then I have all night and day to relax!!  Wish me luck.

Do you have tips and techniques you use to get you through the early stages of a bad Fibro attack?

Patience with our ‘wild minds’

I have been reading chapter 4 of my Mindfulness for Health book by Vidyamala Burch (read the reviews here)  about how our mind wanders whilst we try to meditate and why it does the same when we are in pain.  If we try to force the mind to be still it will kick and resist and we get exhausted by the struggle, if however we let it roam and follow it with our awareness, it will settle down of it’s own accord.  Our minds struggle as we oppose it, if we are patient and focus our awareness in the minds struggle, then it will become calm.  We can then refocus on the breath or body and the mind starts to get curious about the object of you refutation.  It will become gently calm, yet alert and vibrant.


The other reason why our minds refuse to settle, especially if our bodies are in pain or highly stressed while we meditate.  It is natural for the mind to avoid unpleasant sensations in the body.  It will want to distract especially after chronic pain sufferers are told ‘keep yourself busy, and distract yourselves’ only to stop and be in agony!!  We try to avert the pain.  Pay attention to your thoughts, see how it bounces around and drags up past troubling memories and then exploits them in the future, creating stress and anxiety.  Just notice them and give these thoughts and feelings names, but not judging them and then coax your mind back to the breath or your body and continue meditating. 


Think of your thoughts as passing clouds in a beautiful blue sky.  You notice them and let them go and the blue sky is always there.