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.

Advertisements

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.

Changing pain

General anaesthetic (GA)is never good for the digestive system, if you know what I mean! I’ve doubled up on laxidos and last night had my favourite Indian takeaway, but to no avail πŸ˜‚.

I feel quite comfortable, the morphine is helping really well, I’ve doubled up on the tablets and the Oramorph liquid. I slept pretty well, feel very positive. The pain is changing, it hurts to breathe, I have bad indigestion, but this is normal after a GA.

Ha ha I wrote the above yesterday!! This is now, 3.30am on a Saturday morning. I am shattered, can’t sleep as never can on lots of meds, neck and back is uncomfortable! Might get up and chill out, motorbike racing is on tv soon πŸ‘. I could always have a mid-morning snooze! I keep forgetting that the op was only 3 days ago and not 3 weeks ago.

My body clock is all over the place, I need to relax, as this is why I am off work!! I’d love a massage but could not get comfy yet in any one position…….

Stuff it I’m going downstairs, might do some meditation, listen to some music and relax. Maybe have a posh coffee β˜•οΈ.

I am so god damn sore arghhhhhhhh, yet I am soooooo tired. My eyes are rolling whilst typing this πŸ˜‚πŸ˜‚. Speak soon all

Success at improving fibromyalgia symptoms

It has taken me a couple of years of blood, sweat and tears to find out what affects my fibromyalgia. We all have similar symptoms and similar causes of flare ups, but we are all different and a symptom you may have I may not and vice versa.

Flare ups are caused by a number of factors:-

  • Stress and anxiety
  • Insomnia
  • Illness
  • Surgery
  • Certain foods and drinks
  • Doing too much
  • Doing too little

I have introduced a few things to my life that have made a positive difference:-

  • Mindfulness meditation
  • Massage
  • Gentle exercise
  • Positive thinking and affirmations
  • Pacing my activities
  • Hot tub/hot baths
  • A healthier organic diet using 90/10 ratio; 10% being not healthy and organic πŸ˜‚
  • A strict bedtime routine
  • Stretching

I made big changes to my diet which has made a huge difference and affected the following symptoms by either reducing or eradicating them completely:-

  • Removing tingling and numbness
  • Reduction and almost an elimination of anxiety
  • Reduction in insomnia
  • Elimination of diarrhoea and nausea
  • Improved by ability to cope with stressful situations
  • Reduced my negative moods
  • Reduced my fatigue
  • Loss of 25 pounds in weight

In order to find out what food affected me I had to go onto what is called a diagnostic diet for 2 weeks. I basically lived on hunter and gatherer foods and drinks. No caffeine, alcohol, processed food etc and the only meat and fish I could eat is what you’d be able to kill when we were cavemen and women, certain vegetables (green and cauliflower, I added this in as I love it) and berries, kiwi and seeds. The foods I could eat are highlighted in pink on this picture.

then I extended this for another week and could eat as much a liked!!

I got migraines, headaches, cravings and felt awful, the consultant explained it was down to withdrawals. After the 5th day I started to feel much better, in fact I felt great, had more energy and started to sleep more than my usual 3 hours a night!

After 3 weeks I slowly, 1 day at a time, started to introduce one food item a day, I ate it for breakfast along with the diagnostic foods too, then again at lunchtime and kept a diary of any reactions plus any overnight weight gain. If I had a reaction it was very severe and usually was a headache, numbness, tingling, fatigue, diarrhoea, muscle pain or weakness, or a combination of the above. I’d also put weight on overnight which is not actual fat but my body reacting to the food; water retention. I then waited till the flare up passed and continued to reintroduce food one at a time. The list of foods I tried after the initial diagnostic diet are in the picture below. All apart from the ones I crossed out as I had already stopped eating these some years ago.

<
ome foods I can eat rarely as these do not cause a major flare up of symptoms but minor ones, are the following:-

  • Diary
  • Wheat
  • Gluten
  • Low sugar items
  • Caffeine

Foods I cannot eat as they dramatically affect my symptoms the I had reduced or eradicated are the following:-

  • Alcohol
  • Sugar
  • Any processed foods
  • Anything containing E numbers, MSG or anything artificial
  • Eggs (due to the conditions their parents are raised according to my consultant. Poor living conditions, fed a poor diet and given hormones)
  • Chicken (same reason as above)

I don’t eat a lot of red meat but love turkey nom nom. I also don’t eat many ‘other’ white foods like pasta or rice, opting for the occasional wholewheat option or substitutes, occasionally eating white potatoes and switching to non MSG organic gravy. We make all our own sauces now not ones that are pre-made unless free from additives and chemicals.

I can however eat crisps with no additives yummy and very dark chocolate πŸ€—.

Milk upsets my stomach but I can get away with a little bit so I use a substitute, oat milk is lovely and I can use coconut and almond but not soy due to hormone issues (cysts and Endometriosis). I can drink coffee as long as it’s not Jarred and it’s freshly brewed β˜•οΈ.

Alcohol makes me very ill apart from the odd gin but I quit last December as I really cannot see the point, whether this lasts all year who knows πŸ˜‚. I cannot eat mango or bananas as they cause a mini flare as they contain too many natural sugars.

The worst reactions I get are from MSG and sugar. The fatigue and muscle pain are very extreme.

My consultant explained to me that once you go 3 weeks on a very bland diagnostic diet it’s like a reset to the system, so any foods you reintroduce create a much more severe reaction that I wouldn’t have spotted on my previous diet.

Am I an angel πŸ˜‡ nope. I do still fall off the wagon but at least I can pinpoint why and this keeps me positive.

The other things I changed was my bedtime routine. I wear uv glasses as move away from the tv at least half an hour before bed to help calm my nervous system, increase my natural melatonin (blue light reduction) and reduce overstimulation of my brain. I meditate for 10-20 minutes before bed using my headspace app and headphones. I have about 5 different subjects on the go at once πŸ‘ŒπŸ™. This new activity has helped improve my mental health and negative thinking and helped me remove unhelpful thoughts πŸ’­, I just tend to laugh at myself now. I do however allow myself the occasional cry 😭. As I find it helps clear my head and move on from whatever is bothering me at the time, there are no positives in bottling up negative feelings.

Immobility has worsened my morning stiffness and muscle aches and increased my fatigue so much I struggle to walk more than 20 metres or use the stairs in my house! You need to find the right gentle exercise and persevere. I used to be super fit and have muscles pre fibromyalgia, it took me years to accept that I can never train like that anymore. But it doesn’t matter as health has to come first. I find doing gentle interval training on my power plate works wonders for me. Yes I hurt a few days after, but I am going to hurt anyway πŸ˜‚ might as well be hurting from doing something than doing nothing. Find out what works for you; walking, swimming, yoga, stretching, Pilates, biking, whatever, just don’t make the same mistake I have and stop moving. It’s better to ache from moving than hurting from not!!!!!!!!!

I started slow, just a few mins once a week and now I’m up to 5 mins 3 times a week and I will continue to increase this gradually. Everyone has to exercise to stay healthy, you will hurt so just slow it down.

Learning self hypnosis and NLP techniques is also important too, use positive language, behaviours and thoughts. I used to moan constantly but all it did was make myself feel worse. Now I focus on the positives, even on really bad days like today, I’ve been up all night with back pain but at least I’m still breathing and I have a 90 minute massage today and half day off work yay. Yes I’ll be struggling to walk tomorrow as the massage is painful the day after but it’s great for my stiff tired muscles and exercises them.

I know it’s hard and I know how you feel, you want to give up, but what is the alternative? Life is too precious so grab it by both hands, by the neck if you have to πŸ˜‚ and start making some changes to how you live; keep a food log, try the diagnostic diet and eat healthier, use a pacing diary so you know how much you can manage before fatigue kicks in (takes me about 48 hours to kick in) get moving, train you mind like you would your body. If you don’t change your life you will never feel any different!

Take care and ask any questions as I am completely open and honest, no one knows how you feel but someone with fibromyalgia. You can improve your symptoms even if it’s not your primary condition like me. If I can do it so can you πŸ‘πŸ’–

Working with FibromyalgiaΒ 

Let’s be honest life does get much more difficult with Fibromyalgia and it’s hard for people to understand how it feels to have this condition.  I’ve had spinal issues for ten years and had chronic intermittent pain for 6 of those and permanently for the rest.  But I never ever imagined that I could feel so ill all of the time.  

It is only since I started mindfulness meditation that I realised that the pain is not constant, it changes and there are brief moments that I don’t feel any pain.  I do also believe that because our brains and bodies have increased pain sensitivity that we are used to feeling it therefore our brains and nervous systems continue to ramp up the pain.  When I meditate I focus on the areas that hurt the most, which is mostly where I have my fusion.  I slow down my breathing and focus on the area of pain and the area around it and I realise it’s not constant but changeable and I focus on what colours it reminds me of and what shape and contour the areas are.   We are often told by our doctors to ignore the pain and try to keep busy, I find this just stresses me out as I end up only focusing on the pain.  I find by using meditation to focus on the area and acknowledge the pain, making friends with it, realising it’s not constant I feel so relaxed, you can read more here.

Anyway let’s discuss working, some days I often wonder why the hell I put myself through the stress but I’d rather have a reason to get up than be at home depressed and worrying about my body hurting.  My job is very stressful, working with extremely challenging stakeholders and trying to manage my time to work within my limits.  I have had to toughen up and learn to pushback and say no, people constantly try to book long meetings, want me to travel to London (5 hour round trip) for something that could be done over the phone/screen share. There’s an expectation to always be online and work long days constantly attached to your desk, work through lunches and attend lots of meetings,which dramatically reduces productive time to do any actual work.  Meetings are also booked back to back so you end up running from one place to the next and always being late.  
Do not be afraid to speak up about changing your work environment and ways of working.  Here are some of the changes I’ve made to my working week:-

  • Don’t work excessive hours, listen to your body, my fatigue generally takes 48 hours to kick in.
  • Block out lunch breaks, what’s your contracted minimum lunch break?
  • Set your calendar so people know what hours you work.
  • Eat lunch away from your desk, unless you go for a walk at lunch!
  • Don’t be afraid to say no, not everyone’s priority is your priority, negotiate on deadlines.
  • Block out time in your diary to do actual work with a no meetings clause.
  • Switch off your phone and email when working on something to reduce distraction.
  • Book out meeting rooms or ask to work from home when you need quiet time to get stuff done.
  • Make action lists so you don’t miss any deadlines.
  • Don’t stress about things you can’t control, speak to a friendly face and share your concerns, you’d be surprised how helpful someone else can be when they look in from the outside.
  • Book meetings for 25 or 55 minutes giving you time to get to the next meeting and grab a drink or nip to the loo.
  • Make sure you take a healthy lunch and water with you as you need to eat to stay focused.
  • Make sure people factor in breaks to long meetings and especially lunch breaks as you need to rest and eat.
  • Keep weekend work to a minimum don’t let it become the norm.
  • Don’t just say yes to travel, always challenge the need for a face to face meeting, can’t it be done by phone/video conference or a screen share?
  • Have a rule of no meetings till X time, to give yourself time to prepare in a morning.
  • Have a rule of no meetings after X time to allow yourself a reasonable finish time.
  • Work from different positions, could you get a hydraulic desk, I have one and it really does help my back.
  • Block out time before and after meetings to prep or write them up to ensure you stay on top of things.

These are just some of the things I have put in place and I always find that if you’re honest with people and explain why you do the things the way you do, most people are reasonable and understanding.  The ones that aren’t you may have to enlist the help of your colleagues or just stick to your guns.

You are no good to anyone if you end up going off sick.  Many times in the past I’ve pushed myself too much and caused a flare up, now I have learnt the warning signs and I’ve even cancelled meetings as I haven’t felt well, explaining that if I don’t I’ll be off work.  

If you feel you aren’t getting the support you need maybe it’s time to have an honest chat with your boss about your condition or maybe look for another job.  I recently moved out of my old role which I loved as I couldn’t do it anymore, the expectation of being out on the road constantly was impossible.

Put yourself first always even if at first it feels uncomfortable, which it probably will as I know I did. πŸ˜‰.  You can read more about working with Fibromyalgia here 

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 😁