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.

Advertisements

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. 😂😂😂

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.

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. 😂😂

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 😂😂😂😂.

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 😂😂😂😂😂. 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…….,,