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!!

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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.

At home all comfy

I’m tucked up under a furry blanket at home. My mum bought me a triangle pillow which is really comfortable. I’ve started back on the morphine tablets today but they are only 10mg of morphine, not very strong to be honest, I used to be on more than that with the other meds. I’ll probably give the doctors a call later to see if I can increase the dosage a little bit more. I’m topping up with 10mg Oramorph every 4 hours too at the moment.

The daft dog is asleep under my legs

Do you like my sexy green stockings? I have to wear these babies for 6 weeks ha ha woo hoo!! That’s a pic of my thighs not my bum btw πŸ˜‚πŸ˜‚.

Fibro isn’t doing too bad but I have been naughty and just ate some lemon cake for breakfast, I’m okay, keeping positive. Feeling a bit stiff and sore, feel like I’ve been in a car crash today tbh lol. My ribs, lower back and upper shoulders are sore. I also feel like I have a lump in my throat, the consultant warned me about this, it’s not majorly uncomfortable, it’s just annoying.

I’m having a chill day today, the naughty little dog has thrown up on the sofa πŸ˜‚πŸ˜‚. No idea why so will have to keep an eye on him…….

Cannot take any more pills

So far I’ve had 100mg IV Tramadol, 10mg IV Morphine, probably about a full bottle of Oramorph, or so it feels like it lol, but I was having 10mg doses (double the normal rate). Multiple Tramadol, Diahydrocodeine, paracetamol and nefopam. That’s quite a list. I only felt pain relief with the IV and actually woke myself up snoring a few times πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

My throat is very dry and I struggled with the large paracetamol and the last diahydrocodeine, getting them stuck in my throat and they melted in my mouth 😣. Now my tongue is white and very dry and I’m struggling to swallow anything.

I tried to sleep but just couldn’t, the pain in my neck is bloody awful

I tried chamomile tea, crap tv, rocking in bed!! Deep breathing; but that just hurt my throat.

I begged them for some more IV tramadol but I couldn’t as I’d took 2 earlier, orally. They aren’t allowed to give IV morphine on his ward grrrrrrrr. They should have just given me with my own morphine pump like the consultant promised, (I had one last time I was fused), but the new anaesthesiologist said I wouldn’t need it. Really? They broke my neck in 2 places (as collapsed facet joints had fused), a double fusion and fibromyalgia. Well it’s my body, I’ve had it before and did bloody need it!! Great, well I’ve had 2 hours sleep in 24 hours, 4 day before that and no way I’ll sleep like this!! I explained to the lady how fibromyalgia worked, in particular the increased pain! Plus making non painful things hurt!! She absolutely understood and I reckon knew someone close who had it……,,

I have now been given an intramuscular injection of morphine in the thigh. Hurt like hell and they take a while to work as I’ve had them before, last a long time too. Whoops I seemed to have bled on the bed from the injection πŸ˜‚πŸ˜‚

They look like bites! It’s been 20 minutes and I cannot feel it at all!! Great lol πŸ˜‚ I think I’m a machine!!

Ouch

Tried to shut the window and hurt my neck whoops. Chef closed the window as he heard me crying!! Don’t think I particularly hurt it, it’s just that the iv meds have worn off. I’m hurting like hell. It’s pulling, throbbing, can’t turn head to right, it’s aching……….

I can’t brush my teeth with my right arm, can’t push the bed trolley off my bed 😒. You get complacent with these things. ‘Oooooh it’s not that bad!! Then the meds wear off and me sitting in the chair, strolling around, brushing teeth etc. I’m now in a lot of pain’. Not much I can do as only so many meds you can take. I wish they had put on the morphine pump like they promised!!

Oh well πŸ˜” might have to get the music on my headphones and start meditating!! Can’t wait to get home and maybe ask the doctor for a pain patch!! Better than popping 12-16 pills a day; deffo don’t want to get up to 25 plus a day again……….. at least it’s constant relief πŸ‘

Post surgery 2 ACDF

Well that was simple compared to a lumbar fusion surgery!! Only took just over 3 hours and not 5 like last time and that was for 2 discs. Had one nurse telling me no milk, got chatting about bikes to another and she fetched me 3 lattes and ice cream πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

I love this hospital!! They will do whatever they can to make you feel comfortable. I have my own special I V cocktail of morphine and tramadol which is great. Fantastic even. I’m so chilled out, been buzzing constantly for ice cream and lattes lol πŸ˜‚

This cocktail is keeping my pain relief at bay and I feel super chilled πŸ‘.

I’ve been naughty and asked for another ice cream πŸ˜‚πŸ˜‚πŸ˜‚. Just thrown my head back to get my hair out of my face and forgot, arghhhhhhh that hurt!! πŸ˜‚πŸ˜‚πŸ˜‚

The above is my sexy hospital look πŸ˜‚πŸ˜‚πŸ˜‚. Ok doing well just starting to hurt now and visitors coming speak soon xx

β€˜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.