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 😂😂. 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.

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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.

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.

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 😖 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.

Reducing pain meds

I’ve never took Oxy and personally I would never consider this medication for fibromyalgia. It is much stronger than morphine and much research has shown that opiates/opioids are not effective for chronic/long term pain. They can also increase fatigue and insomnia. For the post operative pain I’ve had it’s been a double edged sword. I managed to cut out 90% of my pain but then on the flip side it makes you over complacent, so I do ‘stuff’ then afterwards I’m in agony! I wash too many pots or do some clothes washing 😂.

I am now weaning off; I’ve reduced my immediate release Oxy by half, I’m only dosing 3/4 times a day with 5mg dose. I’ve reduced my slow release dosage from 40mg x twice a day to 30mg x twice a day. The pain has increased quite a bit but I’m using heat/ice alternate to help. I have shooting pains down into the right hand side of my body down my arm and it’s hurting to text which is why I’m not posting often.

I’m walking twice a day, up-to 5000 steps a day. I’m also lightly jogging a little with the walking. Taking my little dog with me but holding the lead with my left hand. I’m doing my physio twice a day;

  • Sitting in a chair twice a day for 10 minutes at a time.
  • Turning my head to look over both shoulders
  • Bending my ear to my shoulders both sides
  • Lifting both arms straight over my head then back down to the sides
  • Squats with arms out front of my body

I am feeling confident with my physio and recovery, but I do also know that without the Oxy I would be in agony right now. I opted to go onto this medication as the doctors kept raising my dosage on morphine and it was slowing my heart rate right down and I was struggling to breathe. I have had no such problems with Oxy, I don’t feel high, I just feel great, it has however blocked out my fibro symptoms, I am not looking forward to these returning. I guess this is why they are abused so much. I don’t feel high at all as my opiate/opioid tolerance is very high. I have had a few weird dreams but nothing major. I’m taking 35mg liquid laxative a day as my digestive system stopped working and is excruciating otherwise.

My little doggy is really helping me.

I am proud that I’m now sleeping well, it’s took 2 weeks post surgery to get here, my exercise is walking only at this moment as I cannot manage anything else.

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 ☀️

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 😍