Grieving for your past life is healthy

It took me over a year to accept my failing health from when it started to get worse. I’d already had a back operation in 2014 and it took over 2 years to recover, I’m not fully recovered and still have pain issues. It was only after I started to develop fibro in the latter half of 2015 that I realised that my life would never be the same. I was working on a very stressful project and suffered some bullying at work, I wasn’t recovered from the fusion and I developed fibromyalgia. The condition got worse until I found myself on a massive amount of medications, mentally ill and feeling suicidal and questioning whether I could continue to work………

Since the diagnosis, which took another 6months and that is fast as it often takes an average of 3 years to get diagnosed. I’ve had to have a double cervical fusion ( fusions now) and laminectomy and now await a date to have the back of my neck bone removed…….it’s been very challenging and trying to hold down a full time job is exhausting and frustrating.

It took me a long time, well over a year to accept that my past life will never be a part of my present life. It is vital you allow yourself to grieve, it’s the same as losing a loved one, you’ll never feel any better than you do at that moment unless your grieve. It involves a lot of tears, heartache, honesty with your loved ones and work (off applicable).

You have to change your lifestyle, give up some of your activities, agree ongoing support and most importantly focus your priority of improving your mental health.

You cannot continue doing what you did before fibro you have to change, I know you don’t want to but it’s not possible if your symptoms are getting worse. Only when you get on top of the symptoms and reduce them, then maybe just maybe you might be able to get back to normal……… read someone else’s story about grieving for your past life here.

Don’t forget you will also have times when your symptoms improve and worsen; things like illness, injury, stress, operations, overdoing things, insomnia, bad choices in food and drink…..all of these things will affect your symptoms. Some of these things you can avoid and others you won’t, but you can always control how you react to them.

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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.

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.

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!!

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. πŸ˜‚πŸ˜‚

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 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

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 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. 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…….,,

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. πŸ˜‚πŸ˜‚

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 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚.

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 πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚. 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…….,,

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!