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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Feeling more hopeful

I’ve had a rough week as you’ll know from reading my last blog. It’s important not to let this get you down too much. Life is full of ups and downs isn’t it? Some of it brought on by my slipping into bad food routines, forgetting to meditate and introducing new routines.

  • You have to stick to a strict routine; get some decent fresh groceries delivered, use a hot pot to overcook food, put in boxes in the fridge to warm up.
  • Don’t over rely on meds, they can increase fatigue and even pain as your body gets used to them. Try alternatives such as cbd or cannabis oil (if you can get hold of it).
  • You must exercise, every day. This will reduce pain and stiffness. Break it into 5 minutes every hour if needs be. Go for a walk, have a stretch, whatever it takes, but no sitting all day……..
  • Take vitamins (high end, not cheap China made). Vitamin B12 injections and folic acid (oral) have been amazing for me so far.
  • Meditate, as often as you can. I like to use YouTube in the day, Deepa Chopra is great, I used this yesterday here. I also use the Buddhify app here. It is free.

I have actually got a good system going with little reminders in my phone to make sure I stick to my routines. If I slip I feel the repercussions, sometimes this happens within hours or days, but I can tell the difference in flare ups now; was it food, reducing meds, bad food, inactivity or overdoing things?

Tackling fibro and pain relief can only be done by establishing a good routine, finding out what makes you feel worse and stopping doing those things. Finding out what makes you feel better and continuing doing these things at the right intervals.

Every single day I wake up I hate myself and I hate my life. I practise gratitude; I lay in bed look out the window, put a heat blanket on my neck, drink coffee (filter made with coconut milk), think about positive things. What makes me smile 😊, it can be anything, it’s your life, don’t let people tell you what to be grateful about, it might be something material. I love my motorbike and I’m so proud I passed my 3 tests first time and have the bike of my dreams, I’ve not been able to ride it in 3 months πŸ˜‚πŸ˜‚. But I will mines the blue one ☝️.

My little doggy

He cuddles me, licks my tears, follows me everywhere and sleeps with me too.

I don’t have many close friends anymore, I cannot socialise much and I needed to keep healthy, so I have just a handful that I see. That’s enough for me, they know how I feel and what I go through every day.

My family are great, my mum, dad, daughter and husband, very helpful.

I love nature and the Earth, we have lots of pets, which cost a fortune in electric and I sometimes curse them when I’m fatigued but I love them:-

  • Dog
  • 3 cats
  • Stingray
  • Tropical fish
  • Marine fish
  • Green day geckos
  • Pond fish
  • Anemones

It’s like a zoo!!

Do what makes you feel good and don’t let other peoples negative opinions away from your routine.

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!!

Bathing is hard workplace

So washing in the shower is painful, washing my hair causes pain for 2/3 days!! So I thought right stuff it I’m having a bath and I’ll wash my hair in there!! Even worse pain than the shower……..

That’s it I’m growing dreads!

I don’t use anything on my hair but organic products so it never gets to the point it desperately needs washing, I only need to wash it once a week so since my surgery 5 weeks ago I have washed it 3 times and every single time it’s been excruciatingly painful for a few days afterwards…….

My head used to itch like crazy when I developed fibro. I decided to switch all my hair and beauty products to organic ones and I’ve never looked back, no more itching, my hair seems to be growing quicker and now I only have to wash it every 5 or so days!! It’s a good job really as washing my hair is very painful.

I’m struggling to wash my body as I feel really stiff!! I bought a long handled brush to help me. I find it easier to stand in the shower than trying to climb in and out of the bath. I prefer baths though as I can soak in magnesium flakes, I find the shower very tiring as I have to stand in it. So it is best to alternate the 2 atm. It’s always best to look on the bright side, bathing isn’t impossible but getting dressed is a challenge as sometimes I cannot raise my right arm far or reach my feet. πŸ˜‚πŸ˜‚πŸ˜‚

3 weeks post op

Well what can I say? I feel pretty darn good! I know for those of you that may be reading this and potentially getting mentally prepared for major surgery yourself, you may be thinking really? Yes, really!! I have also managed to cut both meds; immediate release and prolonged release Oxy down by a lot!! Half on the prolonged and more than treble on the immediate release.

Much of recovering from surgery is your mindset!! Don’t be too hard on yourself, talk through issues with a friendly face, arrange to keep work informed, meditate every chance you get, even if it’s just deep breathing……….

The medication can however make you complacent and temp you as it has me, to do more than you should; when the meds wear off I hurt, ache πŸ˜– then I know I shouldn’t have done it. Like stretching over and shutting the windows above my head, or pushing or pulling something like a clothes basket or shaking blankets out to dry etc…..

Don’t do any exercise until after your 6 week check up and always check with the physio first. I couldn’t do much at my first physio appointment as I was still sore. My consultant doesn’t believe in neck collars as they restrict movement and can actually delay recovery, causing stiffness. Car journeys are painful and I’m not allowed to drive yet, I possibly should be okay from next week.

My neck feels much more sore and achy now I’ve cut down my meds, which is probably a good thing as it stops me doing too much. But it is particularly annoying at night time. I’ve been using ice packs and am now able to use heat on the rear of my neck, upper back and shoulders, but not on my wound.

My fibromyalgia is not too bad as the Oxycodone is keeping it under wraps, but I know that once I wean off it will return and as I still need my lower back fusing I will still have pain. The Osteoarthritis in my neck isn’t cured either, it will still also still cause me neck pain and stiffness.

I have found a great website with information on fitness post fusion with a blog of useful information. The reason I had this surgery was not only to reduce pain, but to allow me to restart exercising again. Yoga yes and I’m hoping to restart HIIT too, with either light weights or just bodyweight exercises. The website I mentioned is here.

Me using my PEMF machine to help fusing.

My Fitbit targets complete…..

I can not recommend a Fitbit Versa enough, my old Fitbit got wet and broke and I lost the other somewhere lol. This new one is waterproof and is more like a smart watch.

Two weeks post op

Car journeys are painful, every time the car jerks around it’s hell. Physio was rough; I cannot do much, so going back in 10 days. I’m starting to sit in a chair each day and I’m walking and doing neck exercises. I managed to go for a walk today with the dog; I just held the lead in my left hand. I was shattered when I returned and was snoozing all afternoon and slept for an hour.

My little doggy has really helped!! He has been really careful round my neck wound.

It’s important to be careful and not to overdo things with the side of your neck that’s been cut open.

Also keep the scar covered in the sun β˜€οΈ

Mentally I feel really good, I think some of that is down to the Oxy, everyone knows they make you feel great. I’m hoping that I can continue this without taking them……..but I know the pain is going to be tough to deal with once I’m off these. I tried cutting back yesterday and was hurting. I’ve cut down the immediate release by half today, still dosing at the same times just cut down by half dosage.

Been out a couple of days, to mums in a taxi and back, felt ill so had to come straight home, went to a gala near our house, let Dave hold the dog lead.

Took him for his first walk today since the operation and looking to increases this to twice a day shortly. Need to take it slow as still recovering.

Still have issues swallowing, still have to look down to swallow. Still having to use a straw, but it’s all good.

So far so good, it’s important to make a plan with goals for recovery, but don’t forget to reassess daily and listen to your body, not other people 😍

One week post op

The last 48 hours have been hell. The pain in the right hand side of my body, neck, shoulders and head have been worse than the first fusion. The reasons for this is that the lower spine I could rest by just laying on the bed. When your neck has been cut open it hurts even to hold my head up, it hurts to swallow, indigestion hurts and I feel bruised inside. This is normal and I am under no illusions that the pain is going to get worse, as I try to undertake my physio exercises.

Ha ha I must have started this post the day before yesterday and then forgot, it was hurting me to text.

I am glad to say today that I feel much better. I think the Oxy is well and truly in my system now. I’m sleeping better than I have done in a long time. I’d never take this stuff for fibro, I can see that you could get in a cycle of constantly increasing your dosage. I can imagine wearing off it is like absolute hell, much worse than tramadol or morphine.

The little dog has been cuddling nonstop, under my sofa blanket and everything lol. He’s so cute and has kept me entertained whilst I am home alone.

Anyway so far so good. The first week has been hell, resting is important, no cleaning, keeping my right arm rested but also not just sitting on my backside all day long. This weekend I want to start walking, build up my strength.

Again I forgot to post this from earlier and now it’s 12.30 at night and I cannot sleep!!

I had pushed fibro to the back of my mind since the operation and today I’ve had a big reminder that it’s still there!! I ate some chocolate cake left over from my daughter which is full of gluten and sugar, the pain in my neck, shoulder, arms and hands is unbearable and I’m struggling to get comfortable. I know it’s my fibro as my lower back is hurting and I have this flu type feeling, a mini flare up. What an absolute tit, I have to stick to my plan, stay healthy. I have a sugar and gluten free cake I’ve been eating fine all week so I should have stuck that that. I’m sure my daughter will be telling me I told you so!! πŸ˜‚

I know some of you probably have not figured out just how much your diet impacts on fibro, I didn’t believe it myself until I went on the diagnostic diet. I could not believe the difference in how I felt once I’d figured out which food types made me illπŸ€’. Here are some good groups that CAN affect your condition and increase some symptoms here.

I know some of you will have tried ‘diets’ I fu@@ing hate that word! Diets don’t work, full-stop.

You have to change your eating and drinking habits and make it permanent. Trust me; cutting out a few foods is pointless if you are leaving several other ‘trigger’ foods in your meal planning. Also when you go onto a strict eating/drinking regime the flare ups are more severe but last hours not days/weeks; why? Because you figure out what you ate/drink to make you ill and stop, thus cutting off the intake of that trigger food/drink.

You are what you eat; eat shit and feel shit!! Eat more fresh food, cut out foods full of sugar; yes, even some fruits, mango makes me feel ill as it’s full of sugar.

I need to eat healthy even more right now, I’m trying to recover from one of the worst surgeries I’ve ever had and being silly is not going to help me. Tonight I will hardly sleep which means more pain tomorrow, no energy, negative thinking and more pain! All this for a piece of bloody cake!!