First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. πŸ˜‚πŸ˜‚

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

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First week post op

Recovering well! My right arm is hurting pretty bad; it’s constantly aching, feels very weak and it’s hurting to text and use my right hand. But the right hand side of my neck has been cut open so it is to be expected.

I lost my Fitbit and broke my other one so I treat myself to a new one, the special edition new versa.

It will help me with my recovery.; as it tracks my sleep, or lack of!! Mobility too. I am just in the process of getting it set up to nudge me to stand up and move around more………..setting a minimum steps each hour.

I am taking 30mg of oral morphine twice a day, 10 mg Oramorph (liquid morphine) and paracetamol in between these doses, every 4 hours.

I’ll finish this off later as need to rest my hand, I am struggling to text………..

I’m back!! Been in quite a bit of pain all day, in fact a lot of pain. Obviously made worse when I am moving, but, also aching and throbbing really bad when I don’t move. The painkillers aren’t working as well as they were a few days ago. I am only sleeping 4 hours once every 2 days. Which is flaring up my fibro and just generally making me feel like absolute hell………. Trying to get comfy is proving very challenging.

I actually thought this recovery was going to be simple compared to the last operation. I felt much more mobile and in less pain in hospital than the last fusion. The pain is changing though. All the anaesthetic they ply you with has worn off completely and the what I only can only describe as,; internal bruising sensation (as this is how it feels) has comes into play. I’ve also had to resort to super strength laxatives after the general anaesthetic. I lost 7 lbs in weight in just over a day. πŸ˜‚πŸ˜‚

My daughter has had to do more chores as I now cannot clean downstairs either. My husband has had to run around like a headless chicken doing urgent items on my lists; he loves my lists I leave laying around πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

Dave and I watched motoGP today and both wore our shirts!! Dave had to help me get dressed as I could not get a t shirt over my head!!

I look rough as hell in the picture above, no make up and not much sleep!! It took my mind off things but not the pain! You know you’ve got bad pain when something your passionate about doesn’t help!!

I have spent a little bit of time reading up on other people’s experiences recovering from an ACDF (double fusion). This has made me feel more positive. We all heal differently and some of us have multiple issues. I find it useful to go into surgeries with my eyes wide open as this reduces post op stress and anxiety. This site is amazing here.

This site has some really interesting myth buster information about neck collars. My consultant won’t use them as he said that they restrict movement too much and are counter effective in recovery. Trouble is sometimes I forget like today, looked up and oh dear the pain was excruciating for over an hour πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. Click here

If this pain continues tomorrow I will have to ring the doctor as I need sleep and have lost 3 nights sleep in a week already, this means I am probably going to get germs!! That would not be a great idea right now…….,,

Processed food, poor food choices and fibro

I never expected foods to affect fibro as much as it does for me. We all know that fibro is all about how our nervous systems work. I like to think of it as a very sensitive short circuiting computer system. Our nervous system has its tentacles in everything in our bodies, whether it be physically or psychologically, read here for more in-depth details.

You already know that if you go on an alcohol and takeaway binge that you will feel tired and sluggish for a few days. With fibro it’s the same, only foods and drinks you never thought would affect you, will.

Diets don’t work with fibro either you must remove all potential food groups and stick to a basic diet of certain meats, all fish, green vegetables and seeds and berries plus no caffeine for 3 weeks. This is the purest basic paleo (caveman) diet there is.

You can only eat the pink foods above but as much as you want to for 3 weeks. For the first 3 days you feel absolutely dreadful as your body craves all the other stuff you have been eating and drinking. I had a bad migraine and had to take 2 days off work!! But then I felt fantastic!!

After 3 weeks you can try adding one food in a day for 2 meals; breakfast and lunch; if you feel well continue to eat it, if you gain weight the day after (water retention) don’t eat it again. If you feel ill; increased muscles pain or fatigue don’t eat it. If you only get a mild symptom that goes quickly then it’s an occasional food!!

These foods are what I started introducing first…….

The ones I crossed out I don’t eat anyway. The above foods have a high risk of you having a reaction.

I felt absolutely amazing on the diagnostic diet and lost 29 pounds in weight. But any food that causes a flare up, the reaction is so severe now it’s puts me in bed in agony, but it’s short lived as I don’t eat it again.

Foods I cannot eat without getting ill are:-

  • Anything containing large amounts of sugar
  • White rice or white pasta
  • Alcohol
  • White bread
  • Any processed foods
  • Eggs
  • Chicken unless it’s organic
  • Anything containing ‘E’ numbers
  • Anything containing gum
  • Anything containing MSG
  • High sugar fruit such as mango
  • No processed sauces, tins or jars

Foods I can eat rarely but never more than 2 days in a row:-

  • Anything containing potatoes
  • Indian takeaway
  • Brown bread
  • Brown rice or pasta
  • Nightshade foods
  • Crisps
  • Dark chocolate (above 85%)
  • Any diary
  • Plain vanilla ice cream

I can however eat any meat but not too much red, any fish, any vegetables and fruit that is not high in sugar. I can eat organic snacks such as fruit bars etc….. organic tins, jars and sauces.

I know some of you may think that you don’t have the energy to cook fresh all the time, but you have to get creative and overcook so you can save meals to warm up other nights, use a big slow cooker and let it cook itself. Or failing that get someone else to cook, my husband does all the cooking and when he’s away he over cooks foods and saves them into containers so I can warm them up to save my energy.

Symptoms that have reduced or in some instances disappeared:-

  • Fatigue
  • Gastrointestinal issues
  • Monthly pains
  • Moodiness
  • Headaches
  • Muscle pain
  • Fatigue
  • Itching
  • Rashes
  • Brain fog
  • Insomnia

Etc

If I eat something my body does not like some of the symptoms above get so severe and come on within an hour of eating it, is very severe but lasts a shorter time.

What I did not realise is that due to me eating foods and drinking alcohol constantly this is why I always felt ill, could only sleep 0-3 hours a night and could not stop having bad flare ups, they were increasing and becoming more severe.

This is why diets or just cutting out one or two foods don’t work, you have to give yourself 3 weeks on the bland diet to clear out your system and remove all toxins. Then take another month to add one food in a day, not several at once. It’s not easy but I have had a better result from changing my diet than any pill I’ve tried and believe me I have tried them all.

Why don’t you try it? What’s stopping you? If you don’t do something different you’ll never change your symptoms or the severity of your fibro. You need to find what works for you and stick with it.

Am I a saint? No bloody way I drank gin this weekend, first time in 4 months and ate 2 takeaways but food I know I can eat such as lamb and fish. Yes I feel fatigued and have muscle pain but it will go……..

Why does this work? Because we absorb food into our immune system, glands and nervous system through our intestinal wall it’s that simple. Bad food makes you feel shit! Good food reduces symptoms.. …. read here for more info and try it out.

The silly season and FibromyalgiaΒ 

I wanted to share some of my tips for surviving Christmas with this condition.  In the sat I’ll be honest I’ve been a right miserable sod as I focused on what I couldn’t do not on what I could do or asked for help!!

If you choose to drink alcohol then don’t expect to have a healthy Christmas, I am going to be brutally honest, alcohol and fibro go together like chalk and cheese.  It’s seriously bad for you, your mind and your body, your already oversensitive nervous  system will make you pay, here’s what happens to me:-

  • Palpitations
  • Overheat or am freezing
  • Numbness in parts of my body
  • Pins and needles
  • Panic attacks
  • Confusion
  • Insomnia
  • Diarrhoea 
  • Indigestion
  • Pain under arms and on my upper stomach when touched 
  • Depression
  • Anxiety

I am sure they are more!!  I used to be able to drink shandy but in the past month I cannot.  It’s your choice but ask yourself why you do it if it makes you feel ill?  Peer pressure, don’t want to look a party pooper?  Personally I’d rather feel healthy.  Do your research on google 

Okay let’s go onto the second thing that affects fibromyalgia; food.  Many of you might not have made that connection but I have my keeping detailed food diarys, food affects our nervous systems in more extreme ways than a person without this condition as we have sensitive nervous systems.  Not only does it affect my nervous system but I now have an inflamed bowel that I am having an exploratory operation for next week, it really is not worth eating shit food or drinks!  Okay here’s some of the food that affects me in a negative way and I’ll give you a few symptoms of what it does to me:-

  • Red meat
  • Cows milk
  • Alcohol
  • Coffee
  • Sugar
  • Anything containing sugar; cereals, dessert, chocolate etc
  • Cheap takeaways, fast food such as McDonalds, KFC and Chinese takeaways
  • Too much chilli 🌢 
  • Fizzy drinks
  • White rice 
  • Pasta
  • White processed bread
  • Processed, packaged cheap food that contains chemicals
  • MSG (found in many foods; Chinese chemical that enhances the taste buds in humans)
  • Too much cheese

I am sure there is more!!

I am not a saint, I’ve slipped up this Christmas, wanting to join in with my colleagues and friends at work, who have been absolute stars ⭐️ I’ve eaten canteen Xmas dinner, been out for s meal and ate red meat and had 2 shandys on two occasions and boy have I been ill, not just with fibromyalgia but also my inflamed bowel has not reacted well to the ‘crap’ food.

I’ve had to take 2 tramadol each morning and I have gone hit more than 3 days and I’m afraid that my body is now needing it to feel normal.  It just goes to show how dependant our bodies get with these pills, the pain from fibromyalgia is extreme, I know that.  But I need to get my nutrition back on track and wean back off these stupid tablets.  One thing I won’t do no matter how ill I feel I will not take more than 2 a day!!

Do not let your condition get you down, it can be controlled, you have to stick with the plan!

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 

Chronic fatigue and feeling angry

I average around 4 hours sleep every night which when I get in the number 5 is a cause for celebration in this house πŸ’. I have a pretty good routine:-

  • A hot bath with magnesium flakes and organic bubbles
  • No tv for a minimum of 1 hour before bed.
  • If I use my phone to update my Facebook page and blog I wear my uv glasses.
  • I only have one coffee before 7am
  • I don’t drink alcohol
  • I keep my room well ventilated with a temperature of around 19 degrees
  • My curtains are black and my walls painted dark
  • I wear ear plugs so no noise can wake me up
  • I sleep naked so I am not restricted by clothes
  • I never eat at least 2 hours before bed
  • I mindfully meditate daily before bed and every other day I undertake mindfulness yoga 
  • I have a lavender plant in my bedroom and place some fresh inside my pillow each night
  • I don’t drink water too close to bed so as not to wake in the night for the bathroom 
  • I have no switched on electrical items in the bedroom

I think that I have a pretty strict routine before bed and I really do feel that this has helped me wake up over the past 3 months feeling more refreshed than I have done in the previous 2 years.  But when it gets to about the 5th day of only have 3-4 hours sleep 15-20 hours in total over a working week I start to lose the will to live.  I cannot concentrate, I’m tired, have no energy, my cognitive behaviour starts to suffer.  I hate everyone and everything.  The fake smiles I have to put on at work, people asking me if I’m ok and I nod and say yeah I’m great (when all I want to do is shout out loud NO I AM FUCKING NOT!).

I do know that if I could ramp up my exercise and tire myself out more I’d sleep better, but how can I do that when I exercise then I literally struggle to go to work.  Pacing ah yes good old pacing.  I’m logging down what I do, how I feel etc but each day is different from the next which makes things a little difficult to track.  Some days I can sit for hours others minutes before I get pain.

I feel like I’m having some sort of mental crash, possibly from coming off citalopram and Amitryptyline?  Delayed reaction?  I’ve been off them 2 weeks.

Does anyone know of how I can get more sleep without resorting to regular medications?  Am I missing some vital information?

Negativity hit me like a cricket bat in the face

I did not sleep well last night.  I got less than 3 hours due to having a sore throat all night.  I went to bed, got up then went back to bed late!


I stocked up on throat supplies and took them to work πŸ˜‚

I went to work and it was very busy, I hardly had a minutes peace to myself, but I enjoyed it and it kept my mind off the pain.  

I completed a 30 minute mindfulness yoga meditation on Monday and my back, each side of my body were sore after this and in Wednesday my daughter rubbed magnesium spray into these areas and they were swollen?!?  But it felt much better.
After spending 24 hours in London with my backpack my back pain has reached epic levels.  I cried on the train on the way home yesterday so had to pop sunglasses on and take 2 Tramadol, I resisted for an hour but I literally could not keep my legs still and I was sat at a table with 3 other people, I hated that I relented and had 2.  The pain relief took about 20 minutes and 3 mindfulness meditation sessions on my phone using earphones to get me to a point of delirium.  I went from crying to giggling, yes I think my new train mates thought I was mental.

The pain moved into my entire body today and as I was at work I ended up taking a Tramadol this morning and 2 cocodamol in the afternoon and grrrrrrrrrr tonight I took another 2 Tramadol.  I was laid on the sofa crying as my back pain pulsed and my skin hurt to touch, my throat feels like I have 3rd degree burns in the right hand side and hurts all the way into my ear πŸ˜“.  I was literally crying and eating food at the same time, I could not even make it to the kitchen table.   My husband came over to give me a cuddle and told me to go to bed for a while if I felt that bad.  

I will not go back on regular meds and I know I will feel rubbish tomorrow after all the pain pills today!! But shit happens and I’ll get over it.


He knows what I was thinking and yes I threw an almighty pity party.  “Why me, I hate this, I can’t stand the pain, I’ve got a busy weekend I can’t afford to have this again right now”.  He always remains positive, “Maz” he says “you’ll be fine in a day or two”and that was all it took as I answered “yeah I know”.  Normally I would be griping, no I won’t, my life is ruined and a load of other negative stuff. But he’s right, I will be okay, it’s just my body’s way of saying hey you are a little sore from travelling and yoga, let’s take it steady tonight, this will not last as pain changes by the minute, it isn’t static.

I know the retraining of my brain is helping, the mindfulness is helping me focus on the now and not the past or trying to sabotage the future with pain I may not feel.  Let’s take it one moment at a time!!

So now I’m in bed, sat upright and cross legged, having had some magnesium spray on my back from my husband, this stuff is awesome, I make it myself.  The aches subside and I’m ready to do some meditation with a smile on my face.