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.

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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 πŸ˜‚.

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. πŸ‘

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.

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.

At home all comfy

I’m tucked up under a furry blanket at home. My mum bought me a triangle pillow which is really comfortable. I’ve started back on the morphine tablets today but they are only 10mg of morphine, not very strong to be honest, I used to be on more than that with the other meds. I’ll probably give the doctors a call later to see if I can increase the dosage a little bit more. I’m topping up with 10mg Oramorph every 4 hours too at the moment.

The daft dog is asleep under my legs

Do you like my sexy green stockings? I have to wear these babies for 6 weeks ha ha woo hoo!! That’s a pic of my thighs not my bum btw πŸ˜‚πŸ˜‚.

Fibro isn’t doing too bad but I have been naughty and just ate some lemon cake for breakfast, I’m okay, keeping positive. Feeling a bit stiff and sore, feel like I’ve been in a car crash today tbh lol. My ribs, lower back and upper shoulders are sore. I also feel like I have a lump in my throat, the consultant warned me about this, it’s not majorly uncomfortable, it’s just annoying.

I’m having a chill day today, the naughty little dog has thrown up on the sofa πŸ˜‚πŸ˜‚. No idea why so will have to keep an eye on him…….

β€˜Normal’ people don’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.

Emotions Impact Pain

I never understood the impact of emotions on pain until I studied for my hypnotherapy diploma back in 2013 and then took a pain management diploma last year.  I also didn’t realise how changeable pain is, it isn’t constant and it is controlled by our brain.

When people have a bad accident the emotional state of the patient is critical to recovery which is why medics often give high doses of medicines such as ketamine to relax the patient so that they don’t really know what is happening, reducing the chances of going into shock.

When I went for spinal surgery I was quite emotional knowing it was a 5 hour procedure with a high risk of paralysis or nerve damage, I was shaky and trying to be brave but my consultant and surgical team understood how I was feeling.  They gave me IV Ketamine as they were setting up my heart monitors and getting the operating table ready as I had to lay face down for my operation, I did not care what they were doing to me I laughed hysterically as the drug took effect then fell unconscious, meaning I was not stressed at all whilst they were putting me to sleep.

After surgery I began to notice that the more I fought (in my mind) not actually fighting anyone πŸ˜‚with the pain that came with developing fibromyalgia and recovering from surgery, the worse it got.

Fibromyalgia increases nervous system sensitivity as well as other other important roles it controls the messages that travel to and from our brain for pain management.  Have you noticed that when you’re sad, upset or in another ‘negative’ mood that pain feels worse, but if someone makes you laugh or you spot something that makes you smile inside the pain reduces, even if it’s a brief respite?  Have you noticed that when you wake up happy and the sun is shining that you wake up feeling less stiff and in less pain?  You might be saying to yourself ‘no’ but you do I assure you, it might not be for long but you will. 

I want you to try something for me, the next time you are feeling happy, are laughing, maybe you’re outside with your family having fun, just stop and do a mental scan of your body and compare it to when you have been in a ‘negative’ mood and I promise you your symptoms will feel much better, reduced, maybe give even forgotten about them!!

This does not mean it’s all in your head, pain is controlled through a complex system involving our nervous system which travels up to our brain through our spinal cord and how the pain is felt depends on the individual, emotions, past memories etc.  Some people can handle lots of pain.  Before my operation my twisting spine was very painful but I still went to work and the gym for 18 months and I had to have my painkillers increased to 20-25 a day until I begged the doctor to do something as none of them worked anymore and fentanyl was looking like the next option and no way was I quitting my job!! But now one little episode of pulling my back, a headache, banging my arm or whatever can quickly become so intense I can end up paralysed in pain or hysterical.

I had a very stressful weekend once dealing with some inappropriate behaviour of some I knew last year and the stress brought on a panic attack, something I’ve not had since I was 17.  I developed a migraine that was so painful I could not see, had to sit in the dark, my heart rate and blood pressure were off the chart.  No medication helped and the ambulance service rushed me to hospital for a potential brain scan.  I was horrified and embarrassed when we realised it was nothing more than a migraine.  Only the 3rd time I’ve ever had one and they had never been that painful, welcome to fibro.

Painkillers are a band aid for pain. Some are very effective but the brain gets used to them and more or stronger versions are needed, not a viable long term strategy for chronic pain.  My painful twisting spine was resolved with surgery but Fibromyalgia is in a league of its own as there is NO cure and not a pill that will keep the symptoms successfully under control long term.  

The nervous system is complex, feel free to read more about how it works here. I not only talk from being a qualified hypnotherapist and pain management therapist but someone who has Fibromyalgia.  I believe the messages/chemicals that are supposed to travel back from our brain to our nerves during pain do not work properly and no operation or pill is going to cure such a complex system.  Even if they did invent something to help at what cost would this be to our health.  All medications give side effects as they change our mind and bodies state.


I know some of you are desperate for a cure and hate having this condition and let me be honest I’d give a limb if I thought I could get rid of it but I can’t.  So I do the next best thing and accept it is part of me, fibro will never go away and me and my fibro (I’m thinking of giving it a pet name) have to coexist and get on.  Like you might have to with a naughty sibling or a demanding irritating boss at work.

Learn from your experiences; the most powerful skill you can learn is how to control pain, how to reduce the length of time a flare up lasts and how you react to both of these! 

My flare ups are rare and they don’t last longer than the same day they occur as I use my mind to help me get through it.  I can’t stop all flare ups as I want to live, I want to work, I want to go out with my family and I want to have holidays, but I can change how I feel about them.

My top tips for dealing with pain:-

  • Remember it will pass, pain changes and is not constant, it is like a volume control on a radio and you can change it in any direction you want.
  • Stay positive, if you are struggling then have a good cry and then do something to make you laugh.
  • Exercise helps and reduces pain long term whilst releasing endorphins like a natural anti depressant.
  • Stay away from fibromyalgia support pages that focus on negativity as this will NOT help you at all.  
  • Try yoga, not once but every day for just 5-10 minutes.  Have you ever met a miserable unhappy yoga teacher?  No of course not.  It’s relaxing and gives you focus and mental clarity.
  • Only temporarily increase painkillers then cut back asap.  Remember these are not the solution, they are a band aid.
  • Listen to music, meditate, undertake self hypnosis to lift your mood, clear your head, take you to your happy place 😊
  • This last one might sound crazy but I actually use my headspace app and focus my breathing through the area that hurts and it changes the pain.

One last thing do not sit and stew about the pain as this will feel increase the pain.  Talk to someone and if you haven’t got anyone you are more than welcome to talk to me 😁