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.

Practising mindfulness at work

Would you spend a few minutes each day practising mindfulness each lunchtime at work if someone told you you’d be more productive in the afternoon?

I’m hoping you answered yes to this?

I have been very strict at work since I changed jobs.  I book out 30 minutes of my diary each day to eat and practise mindfulness techniques whilst listening to music. The canteen is full of chattering people and I cannot stand to sit in there as the noise makes my head spin,but when I pop on headphones 🎧 I love it.  I get totally caught up in the moment.  I savour my food taking it real slow and mindfully eating.

I also watch other people eat, examine what they eat, look out of the window and watch nature in full effect.  I don’t day dream and I don’t spend my lunch break on my phone.  Maybe I might update my FB page but nothing more?

Before this latest fibro attack brought me to my knees and I had to step away from my job I never really had a lunch break.  Since I started to have one I cannot believe how much more productive I feel in the afternoon.

Try eating mindfully; savour every mouthful of your lovely healthy organic food, take your time.  It can take me 15 minutes to eat my lunch minimum.  You will walk away so chilled out!

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.

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 😍

‘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.

Diagnostic diet part 2 and Fibromyalgia 

As promised, I would send you an honest update on how my diagnostic diet is going.  I started before I spoke to the consultant and completely ditched all processed food, so nothing came out of a packet.  I lost 7 lbs in 2 weeks and felt so much better; less fatigue and reduced muscle pain.  

I went into the diagnostic diet for 2 weeks to cut down my diet to a very basic bland hunter gatherer type.  This basically removes all potential foods that could cause a reaction with my nervous system.


You only eat the highlighted foods for the first 2 weeks.  You track your symptoms and at first you feel worse; giving up coffee gave me a migraine.  I lost 12 pounds in 2 weeks!!  

After the first 2 weeks my daily headaches disappeared, my fatigue was reduced, my muscle pain went away and the nerve sensation issues I had like tingling, itching, pain upon touching disappeared.  

I was just coming out of a flare up when I started the diagnostic diet and my sleep was terrible; 7 hours over 3 nights.  I asked for 5 days worth of sleeping tablets and usually they take my sleep from 3/4 hours to 4/5 but this time they worked great.

It took about a week to get over stopping the sleeping tablets (this is why I don’t like to take them)! Now I’m sleeping much better, deeper and longer 5/6.5 hours. 👍

Switching to fresh food only I lost a total of 1 stone and 7lbs in a month and never went hungry.

My moods are better, less extreme and my menstrual cycle was less severe.  I haven’t had digestive issues either.

The next phase of my diet is to slowly start bringing in the rest foods not highlighted on the photo above, one by one and track symptoms.

So far I’ve been able to eat asparagus, grapes, veal, tuna steak and tomatoes.  

I’m still not able to exercise until I’ve finished the next month as this could skew the symptom tracker.

I can’t wait to restart proper exercising as I’m so weak, getting out of breath walking up hill or up or down steps.  I couldn’t even keep up with my 67 year old dad!

It’s not easy as you have to have willpower and you have to track everything; symptoms and weight, which will start to increase if my nervous system reacts to it.

I have a comprehensive stool analysis kit to do and send off but I need to wait till I get paid as it’s £160 for the analysis; 3 collections and I have strict guidelines to follow including mixing with liquids, dealing and posting lol.  I have a list of other tests to do too that I have to pay for as the NHS has refused, simple blood tests.

I am willing to do anything to feel better and the Airedale Allergy Clinic here have done more for me than the NHS have in over 3 years.  The NHS don’t have the funding or support to investigate or locate cures for conditions like Fibromyalgia.  The US are way out front in this area as it’s about making money and a cure or even medications or treatments would rake in millions.  GPs are trained to give us meds and there aren’t any specialists only pain or arthritic specialists available in the UK, we are sent to these for more band aid treatments for our symptoms.  What we need is locating and dealing with the root cause!! 


Feel free to ask me any questions!  Or join my page here for more insights and research sharing.