Routine and sticking to them

It’s so important to find a routine that works and stick with it. We are creatures of habit………….

How many times though can you remember starting something with good intentions, only to let it go, then wonder why am in so much pain, why can I not sleep, why has my fatigue worsened, why am I having to take more painkillers??? Then you remember, whoops!! I stopped doing ‘X’!!

I struggle to get up at the same time every day, I’ve been awake since 4am for the past few nights due to restless legs; pain from my neck that travels down into my hip, develops into nerve pain which then goes into my arms and down my groin into my right leg. It’s one of the most annoying sensations, especially when it also travels into the arms. Now, if I get rid of it and go back to sleep I ruin my entire routine and feel dreadful and can’t get to sleep the next night. But, if I force myself to get up, Go for a walk, use a heat blanket on the source of the pain or massage the area, then just maybe things will be okay? Apart from the fact I’ve only slept 4 hours and feel like dog shit on a shoe 😂.

Constant pain causes depression, anxiety and fuels negative thinking; what if this never goes away? What if it gets worse? Blah blah blah!! But really, where does all this negative thinking get you? Absolutely nowhere that’s where!!

You have to learn to allow the thoughts to come and go, every single person has doubts, worries and concerns, everybody……. meditation allows us to not let these thoughts take over, you just learn to let them come and go, acknowledge them and let them go………..

Now last week I was so depressed, so down, that I had already planned on taking medical retirement from work, being bedridden and possibly hooked on oxycodone for life!! I mean no one can see the future, I could actually make all this happen if I wanted to but I won’t, I’m not a quitter!

Now this week I feel more optimistic, I am learning to take things one day at a time. I had got a plan in my head to get back to work in August, I know now that that’s impossible, so I’ve got another sick note, I have set myself a daily routine of exercise (which consists of 2 x 5 minutes walks and 2 types of neck exercises) and lots of rest. I have raised a few ideas with work that may get me back to work earlier, if the answers are no, then I’ll remain off for as long as possible and that’s what I told them!!

Everyone has good and bad days, but who decides which they are? We do. Every day should be a good day, I don’t have cancer, none of my disabilities are going to kill me, the surgeries could have, but they didn’t. So every day is a good day isn’t it?

So here I am 7 weeks post surgery, the pain is constant, it ramps up to levels that make me cry out, but then it reduces to just an awful niggling constant ache with electric shock zaps, I have numbness and weakness in my right arm. Numbness and weakness in my right leg. Constant headache, migraines in the rear of my head, ear ache and jaw ache in the right hand side. Muscle stiffness and pain in my head, neck, right shoulder, upper back right side and into my arm. I am also still struggling to swallow properly. It is far worse than just after the surgery but the Oxy makes it manageable. I am using strong cbd mid morning and mid afternoon and it’s actually helping. Yay. 30mg Oxy at 6.00am and 5.00pm. I need to start weaning off these meds soon before it’s fully in my system, back down onto morphine, but not yet. I have a plan to help me reduce down, I’ll try again in another week. 👍

I must stick to my routine! More information about my 2nd surgery is here, in case you are thinking of having this yourself.

Having ANY surgery with fibro is very very challenging and much much more painful.

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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!!

More pain and spasms 4 weeks post op

So here we are it’s been 4 weeks since surgery, time flies!! I am in a lot of pain, the most I’ve had since the surgery. I am however doing more………..which I pay for days later.

Good points are that the left hand side feels great, not had a twinge since surgery, obviously the left hand side of my neck is tender, but not the shoulders or upper back. I can actually turn my head and bend it towards my ear, further than before the surgery.

Bad points are that I am struggling to sleep as I cannot get my head comfy, it hurts to sleep on the left even though I had surgery on the right, but I did have my neck broken in 2 places on the left!! The muscle and nerve pain is much worse in my head, neck, shoulder, upper back, arm and hand. It hurts to type with my right hand, I cannot lift heavy things, I am also getting bad headaches at the back of my head.

I have took the decision to stop Oxycodone as I do not want to be on it long term, as it will be harder to come off. The doctors won’t give me any immediate release Oxy anymore and the slow release is only lasting about 6 out of 12 hour intervals. I’ve gone back onto morphine and Oramorph for breakthrough pain. I’m in agony, all my head, neck and jaw feels extremely tense and the muscle spasms and nerve pain is pretty bad. My fibro is flaring up a little bit it’s not unmanageable.

I am taking short walks, I am increasing my targets on my Fitbit slightly each day. I am now managing 3 walks a day and take my cute little doggy with me (apart from noon as it’s too hot for him).

I have a PEMF pad that uses pulsed electrical magnetic therapy, I have been using this at the rear of my head, neck and shoulders. They use this technology in hospitals and it can aid the fusion of the spine too.

I have looked on a few sites at community posts and there are plenty of people still struggling with pain a double cervical fusion after weeks/months so I don’t feel so bad about it now. I need to be patient, take it steady and learn to relax more. I restarted my meditation yesterday and that should help me relax and focus. I always forget to do it anthem after a few weeks I feel stressed, when I meditate I feel less anxious and more, well normal.

Changing pain

General anaesthetic (GA)is never good for the digestive system, if you know what I mean! I’ve doubled up on laxidos and last night had my favourite Indian takeaway, but to no avail 😂.

I feel quite comfortable, the morphine is helping really well, I’ve doubled up on the tablets and the Oramorph liquid. I slept pretty well, feel very positive. The pain is changing, it hurts to breathe, I have bad indigestion, but this is normal after a GA.

Ha ha I wrote the above yesterday!! This is now, 3.30am on a Saturday morning. I am shattered, can’t sleep as never can on lots of meds, neck and back is uncomfortable! Might get up and chill out, motorbike racing is on tv soon 👍. I could always have a mid-morning snooze! I keep forgetting that the op was only 3 days ago and not 3 weeks ago.

My body clock is all over the place, I need to relax, as this is why I am off work!! I’d love a massage but could not get comfy yet in any one position…….

Stuff it I’m going downstairs, might do some meditation, listen to some music and relax. Maybe have a posh coffee ☕️.

I am so god damn sore arghhhhhhhh, yet I am soooooo tired. My eyes are rolling whilst typing this 😂😂. Speak soon all

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!

‘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.

I have found my spirit

Something happened to me 2 weeks ago, I was travelling home on my motorbike and I’d been having a hard time with withdrawing off all my fibromyalgia medications, crying every day and generally feeling very disturbed, lonely and depressed. But one day whilst riding home, I felt free, different, like I’d dropped something off on the way home. I got home and after locking up my bike I just sat in the house smiling, knowing I felt different but not really understanding what had happened.


I thought about this most of the night and I thought maybe this was due to the transition of coming off a number of regular medications, which quite frankly didn’t work or did for a short period of time and transitioning to natural supplementation.  I mean what else could it be?  Acceptance, maybe my mind had shifted by undertaking mindfulness practises every day with yoga and meditation?  Maybe it was a combination of everything?

Well whatever it is it’s like it all clicked into place.  I’ll be honest since that day the fibromyalgia really hasn’t bothered me too much as long as I stick to the plan.  What plan is this you might ask?  It’s my plan.  Something I’m working on for me, something I will share with the world once I prove it works and something I dream about doing as a profession.  This is why I’ve been given the gift of fibromyalgia after my spinal fusion. It’s to learn optimum health, the meaning of my life and to help others, thats what I feel happened to me 2 weeks ago.


So what are my tips for starting your plan?  Tackle the number one problem; stress. Work on your diet, you must find the right exercise for you and do it every day and find the right supplementation. Retrain your brain using mindfulness meditation, self hypnosis and other techniques. It takes blood, sweat and tears but one day the weight will come off your shoulders too.

You’ll never cure fibromyalgia but you’ll learn to live with it like I have, even maybe learn to love it ❤️. Sound crazy?  Not at all, do you love yourself?  Learn to love the condition and help your body cope using the power of your mind.  Your body deserves that. 

Tips for managing stress:-

  • Don’t worry about the things that are out of your control (for example developing this condition, just accept it)
  • Take things one step it day at a time (don’t worry about tomorrow or next week, use mindfulness to bring you back to the present time)
  • Prepare for stressful events by taking 5-10 minutes to focus and calm your mind. (Close your eyes and visualise your favourite place, taking in all the sights, sounds, smells and turn up everything including the colours and noises)
  • Try and look as change as positive or as a challenge, instead of assuming it is an hindrance.  (List down the positives of what the change could bring)
  • Ask yourself what you can learn from things, and how you can inspire or motivate people from your experience. (Is there a friend or someone in a focus group who is having a hard time that can benefit from what you have learnt?)
  • Share your worries or concerns with like-minded people.  You are not looking for sympathy, but empathy. (Sharing with a focus group or friends can be empowering)
  • Take a 5 minute walk if you can.  Walking and stretching can renew your energy.  (I walk every day for at least 5 minutes and do mindfulness yoga daily.  It’s relaxing and clears your mind).
  • Remember to eat (fibromyalgia makes your nervous system over sensitive so how often you eat and what you eat makes a massive difference to how you feel both mentally and physically, make it natural, organic and small meals every 3 hours).
  • Try and set realistic goals – but don’t push yourself, you have been through enough already (your goals can be simple enough to be achievable and you need to have them pinned up somewhere where you see them).
  • Journal your thoughts or begin a simple blog.  Reaching out to others who have been through similar experiences can be life changing (I do this both on WordPress and on Facebook, my sites are not to share negativity but to share my experiences with others but also to allow me and others to laugh at the ups and downs on finding my path, you need to write down the purpose of your blogging, this will keep you focused).