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 ๐Ÿ˜Š, 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 ๐Ÿ˜‚๐Ÿ˜‚. But I will mines the blue one โ˜๏ธ.

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.

Advertisements

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.

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 โ˜€๏ธ

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 ๐Ÿ˜

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!! ๐Ÿ˜‚

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 ill๐Ÿค’. 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!!

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 ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚.

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 ๐Ÿ˜ฃ. 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 ๐Ÿ˜‚๐Ÿ˜‚

They look like bites! It’s been 20 minutes and I cannot feel it at all!! Great lol ๐Ÿ˜‚ I think I’m a machine!!

Canโ€™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!

โ€˜Normalโ€™ people donโ€™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.