Ways forward when living with Fibromyalgia
I came across this blog entry (click here) and it’s like this person has written what I have been intending to write for ages so it has prompted me to put a few words down!
As some will know my health has never been the best having had an auto immune condition since a child with numerous visits to Great Ormond Street but luckily I have always had horses in my life and I truly believe being with them at every opportunity and getting outside is what has kept me sane throughout – and the support of family of course! It’s not something I dwell on any more or really look back on but I will run through some of it just so you can see where I was then compared to now, having spoken to a few people lately with similar conditions I am finding it’s good to talk and it’s good to share a positive way to live with these conditions and to give hope and show it is possible, if I can reclaim my life so can others suffering, you may not reclaim your life back to how it was but that’s not what this is about, this is about finding a different way of living, a different way of being and one that can actually make you even happier – sounds impossible doesn’t it! If I was reading this 4 years ago I would have laughed, but perhaps carried on reading living in hope so perhaps you will too.
This is a post I shared on Facebook 3 years ago, it came up on my "Memories" and I laughed when I saw it realised just how far I have come, I would never post anything like this now!
I was finally beaten 3½ years ago wallowing in self-pity, in my darkest place unable to see the point in going on other than if I didn’t it would hurt those I love so much so I continued in a depressed state. I felt I had lost it all, I was in constant pain, I was so exhausted I could hardly get out of bed, I finally gave up Tigger my pony of a life time having already given up everything else I loved so much. My health saw me go from working full time, running a pony rescue centre, owning up to 5 of my own horses, volunteering in the police specials (I wanted to be a police officer), and having a great social life to being stuck in a room, sometimes venturing downstairs and the only energy I had when I had it had to be used to work to keep the bills paid, it was a depressing existence and no wonder I was at the end of the line. And wow did I wallow in it a lot, I cried, I screamed, I tried punching things but it was too exhausting, so I cried more; I deleted my Facebook because I couldn’t bear seeing friends having fun going out whilst I was stuck in and I couldn’t bear seeing friends posting pictures with their horses because I no longer had my boy, my escape. I thought I couldn’t get much lower but then my cat was taken by a car on the road, and my grandad who I loved dearly passed and I stressed, I wound myself up in my head more, I beat myself up with guilt for being so useless so I would then try to do things but this resulted in me feeling even more useless when I couldn’t do it, and feeling like I was letting everyone at work down because I was so unreliable, additionally I felt I let all my friends down because I always cancelled plans, eventually they stopped inviting me and this hurt a lot.
My "conditions" are Auto Immune Haemolytic Anaemia, Fibromyalgia, a weakened immune system due to a spleenectomy to fix the anaemia, and over the years various other things have popped up mostly to confuse the doctors and make them do more tests with no results - one thing about being "rare" is they like to keep doing tests!
So you get the idea, I was filled with a lot of negativity and could see no way out. I see now my thought processes did not help and stressing, worrying and feeling all the negative emotions was part of the fibro, that kind of pattern feeds the illness.
So Matt's blog lists "7 WAYS TO THRIVE WITH CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA" and this how exactly each of those things helped me:
Acceptance is a huge deal, and very hard to find. It was during my mindfulness course (more below on this under the meditation heading) that I found some sort of acceptance but it wasn’t quick and it was a little while after when I continued to practice and find other things I loved that I finally found it. The course was 8 weeks and 5 weeks in I still couldn’t really see how I could accept losing so much of my life, but I did, I found a way to move forward to let go of what was and start thinking about what might be instead. It had happened, I couldn’t change it, I have no control over the past but I do have control over my future and so I accepted my losses, my health and my life as it now was. I accepted I can’t do everything I want to and so to prioritise and not to push. I accepted the feelings I felt and I accepted there was nothing wrong with feeling them. It was a huge step forward to a better life.
Mindfulness helped me learn how to deal with my health, how I was dealing with it wasn't helping and in turn I would suffer from stress and depression which only made any health issues last longer. Learning how to live more mindfully has helped me manage my life and enjoy it again even when my health has its moments. I'm not saying I'm perfect..! I still have days when whilst suffering a fibromyalgia flare-up I feel angry and that I am letting people down because the pain and tiredness results in time off work and cancelling plans but instead of letting these negative feelings grow and control me I am mindful of them, I acknowledge them, deal with them and so before I know it they've drifted off and the positivity has returned, I also find this type of flare doesn’t happen often as I am in tune with my body.
Mindfulness can come in to play in many different ways these are some of my experiences and what I have found helpful:
Mindfulness meditation has been life changing for me, this was the first type of meditation I ever did which then opened me up to the other types I now also do. The body scan meditation was very strange the first time I was introduced to it on my 8 week course, it involves being guided through a meditation, slowing your breathing and then working through every part of your body (and I mean every part including individual toes). It's a great process to go through as you really learn about your body, where the aches and pains truly are; it makes you stop and breathe two very important things to do. Initially I found it hard to concentrate on areas of the body where pain was, surely it's better to block it out and ignore it as best I could? Turns out no... I found breathing in to and through the pain, letting the breath expand out around it somehow helped lift the pain a bit, it took time and practice but it has helped.
Other mindfulness meditations I enjoy are a sitting one concentrating on breathing in and out slowly and also a walking meditation concentrating on the movement of the body, the step, your balance, shifting your weight and your breath. This is a great one do to walking around with the herd of ponies or out walking the dog.
Inevitably when meditating especially when new to it thoughts will enter your head and race around, the way to deal with them is to just let them be, acknowledge they are there and let them pass by; imagine the thought just passing through in one ear and out the other - and whatever you do don't beat yourself up for letting them come in during a meditation it's going to happen so simply acknowledge it and let it pass.
My favourite mindfulness meditations are by Jon Kabat-Zinn who has also written various informative books, you can find out more information about him here. His books and CDs are available on Amazon.
This one hit me hard one day when I was a volunteer for a trial of a mindfulness meditation course at the Dartmoor Pony Training Centre. I was there for a day which was a lead up to their 3 day course and I was asked to stroke a mare and feel her, feel how her fur felt on my fingers, take in her presence, her smell everything. I couldn't do it I had to walk away touching her and actually thinking about it had me instantly in tears; it wasn't too long after I'd had to re-home my pony because of my health which I'd struggled to deal with, losing him had sent me in to my biggest depression and although I'd been around some horses and ponies since I'd obviously been on automatic pilot and touching this mare brought so much emotion out of me that I felt I had to walk away. It's a brilliant example of horses being such incredible natural healers. I know the horse was sending her own healing pushing me to acknowledge and release these emotions and it took me to be in the right mindset to feel her and let it happen. Although I walked away I was able to acknowledge those feelings I'd suppressed and as a result deal with them.
This too was a revelation to me, we were set various tasks as part of my mindfulness course including being mindful when cleaning our teeth, when eating dinner and even washing up. Doing this made me realise just how much we rush through life not really taking in what we are doing. Next time you clean your teeth feel the bristles, taste the toothpaste, feel the movement on your teeth and gums; next time you eat your dinner chew each mouthful lots of times don't rush it savour the flavours, the texture and note how your body reacts to it and swallows; when you wash up take note of the bubbles, the warm feeling on your hands and perhaps the horrid grease from the plates!!
This includes mindfulness walking but also being mindful of everything that is around you, the smallest details out in nature, breathing it all in and taking note, clearing the mind and just watching and listening. You can focus on one thing like say a spider making its web (I've done this many times sat under the oak tree in the fields behind my house), I get lost watching the spider busying itself noting each tiny leg movement. It could also be walking along, clearing your mind and looking at all that is around you, the little detail on the brickwork of the building you walk past every day but never really looked at, the way the sun shines and glistens causing a sparkling effect on the floor, the different colours and textures on the individual leaves of a tree - there's too many to name but you get the idea look and you will see and as you do this your other thoughts stop, you get drawn in to the tiny details so it's all you're really focussed on leaving the stresses behind!
More information on my website here
Pacing your life is key to being able to do what you love, self-care and self-love are a big part of this too. If you love yourself and care for yourself you won’t keep pushing and getting yourself into that vicious circle of exerting too much then crashing and burning. I learned how to pace my life, giving up my pony Tigger helped me to do this as part of my problem was I had to go and see him every day, if I managed to get to work it was a huge struggle to then see him too and inevitably I would crash and be unable to work or see him. If I was off work and went to see him I was crippled with guilt because I felt if I could manage to go and see him I should be at work and so I would push again to do both, on top of that I would try to keep my partner happy by going out for a walk or doing something together. I remember we were on Dartmoor walking along a river and I was exhausted and I had a massive panic attack because I already felt so exhausted and I knew it would mean I would be stuck in bed again and off work and so I just stopped doing anything other than working, but this wasn’t healthy for the mind, and the body responds a lot to the mind and the state it is in.
Pacing isn’t easy when you have others relying on you, when you work or when you have to say no to people; guilt was a huge issue for me as I always did things for people and hated saying no, but you know what if you can’t look after yourself you are no good to anyone any way. Self-care and self-love also mean saying no, even to those you love, this is particularly difficult if you have kids so the next thing to remember is do not be afraid to ask for help rather than push on, it will keep you in a better place long term for your kids. It is another thing that is very hard to do but it’s part of pacing, prioritising, doing what is right for you not those around you, this may sound selfish but I assure you it is not I am sure your friends and family would rather be around a happy you than a tired, depressed, ill you.
You have to learn pacing and what works for you, and if you do overdo it don’t punish yourself, things do happen in life we can’t control and sometimes we have no choice. I started with pacing my work, my life for over a year was work part time and then bed when home, then it was work full time but bed when home and my weekends were spent in bed. It wasn’t much fun but slowly I was able to do more. I started my horse healing course and so twice a month on the weekend made the journey there, I then started to go to a local healing group every other Tuesday evening, I moved to the countryside and we got a dog and I started going outside a bit more, even if I sat a by the river whilst my partner threw balls for the dog it was a start. I slowly built everything up, when I felt the slightest pull of a flare up I stopped everything (and I still do) and the flare ups didn’t last as long as a result. Work was something I really struggled with initially in the early days, I resented having to go to work and that was my life, that because I had to work I had no life due to the exhaustion and pain I was in having struggled to be there, benefits are particularly difficult to get for conditions like this and I didn't want to be on benefits any way but I wanted something in my life I enjoyed not just work. Thankfully of course it all changed as I kept working at it and having read the Tao of Equus and found the horse healing course I had something to aim for.
Now I find myself with the most amazing life, I can walk my dog most mornings now. If I have the energy we go out for an hour, if I don’t we just go to the back field and I throw a ball with the ball thrower as it’s too tiring to keep bending down. If I am really bad I stay in bed and leave the back door open and he has to just put up with it until my partner is home to walk him!! But mostly I either walk him for an hour or throw the ball in the back fields. My partner walks him in the evenings as I can't manage that after being at work but that's fine for now, being out with the dog is therapy for me too - more on that under the nature heading.
I also have a horse now, I couldn’t have one to look after every day still as my health wouldn’t stand up to it but I find myself in the amazing position that I can do whatever I like with Jojo but her owner looks after her so if I can’t go up it doesn’t matter – this has made me so happy, when I feel exahusted after work I go home and rest, if I feel I have enough energy I go and see her and the herd and sit with them, and at weekends I ride when I can, I still haven't managed to ride after work other than once as it is too much but I am as happy sat spending time with the herd so it doesn't bother me, I accept my limitations and work with them.
I finished my horse healing course after 2½ years which helped me through all this but has also had the added bonus of turning me into an Equine Healer, that along with my reiki and crystal healing means I am able to do something I love - healing with people and animals (especially horses) together and help their relationships, I am so passionate about this and love it so much and it is not too much of an exertion to do, so I have found a way to be around people, horses and other animals in a way that fits in with living with fibro.
Ok so my diet could be better…. However 2 years ago I went vegetarian and I keep attempting vegan, I have given up most dairy now and plan to give it all up eventually but am doing it slowly. I feel that less dairy has really helped me and I really notice the difference in my health when I give in to dairy I soon stop again as I notice I start feeling off. I eat much more fruit and veg and I find magnesium supplements have really helped me. Still a long way to go for that perfect diet but my self-control with crisps and some sweets has never been the best!!
I did find eating hard initially because I felt too exhausted to cook and so a slice of toast or a microwave meal was the easiest option, I am lucky as my partner is a brilliant cook and often cooks dinner for us taking into account my special requirements. The other thing I do is cook up big batches of food in one go then freeze it so I have a supply of healthier ready meals that just need putting in the microwave (would rather not have one of those but for now I feel I need it).
Supplements I find have helped me are a Vegan multi vitamin from Holland & Barrett, a magnesium and calcium one, I have to take folic acid and I also found devils claw and turmeric to really help.
Although not diet related as such whilst on tablets I will also add a bit about meds. I don't take many medications any more, I've tried a huge array of drugs over the years but nothing worked and I disliked them all. I found the side effects worse than what they were trying to cover up. One of my issues is the fuzzy head and not feeling very with it and so when most of the drugs caused that I hated not knowing if it was me feeling like that or the drugs causing it, I always preferred to know my base level and so I never lasted long on most medications and the ones I have to be on to suppress my immune system I am fighting to get off as soon as possible. The only medications I take now are paracetamol, ibuprofen and codeine, I take the codeine only when it is really bad.
I strongly believe with fibro the less we do the worse and harder it is to then do something and we keep deterorating. This goes against the grain a bit when talking about pacing, stopping and feeling exhausted but from my experience when I did nothing and just rested I then couldn’t do anything as a result as my fitness levels were so low and my body couldn’t cope with it and so the smallest thing was an effort resulting in flare up. So exercise needs to be balanced carefully with pacing in mind and built up slowly. A couple of times recently I tried jogging and soon stopped as I realised that really was just too much and I need to stick with walking for now, I ended up too exhausted and with a flare up but I recognised what caused it quickly and for now walking is my exercise, as is the horses.
So how do you start with exercise? Initially it can be really small things like leg stretches, walking up and down the stairs. If you manage the stairs once a day for a week do it twice a day the next week, exercise doesn’t have to mean going out for a run. For me it was walking and building that up slowly, I also find my walks give me a really good gauge on my energy levels,
some days I am bouncing around and other days like today it was more of a struggle so I know for the next few days to rest up a little more and not do such long walks or visit Jojo after work and that I just need to come home and chill. It’s about getting in tune with your body and finding what works for you. I sometimes help with all the horses at the yard, there are 5 of them and once a week I usually muck out all 5 horses, do their waters and their hay nets, I won’t do this if I feel a flare but it is so amazing to be able to do it, and again I learn how my energy levels are as sometimes I fly through it and other times it takes me hours! I don’t mind though I just do it really slowly and stop and hang out with the horses for a bit in between and if I do that I find it doesn’t cause a flare up, if I am struggling more than that I just stop having done what I can but that’s rare.
There is a really good website about exercise with fibro and recovery http://www.living-smarter-with-fibromyalgia.com/
Gratitude is an amazing thing to have, I never thought I could be grateful for my fibro and auto immune condition but I am so happy and loving life and I would not have this life if it hadn’t been for my illness taking me down that road. I am grateful for so much and every day I say thank you to the world. Being grateful helps bring a positivity into your life and you can never have too much of that!
Nature truly is my church. I moved out to the country about 2½ years ago and it has helped me heal so much. I've always been an outdoors person but to have this on my doorstep has been a huge life change. I have a river I sit by and an old oak tree I sit under and meditate when there.
I listen to the birds and watch them the geese, swans, herons, ducks, woodpeckers, sparrows, chaffinches, jackdaws, buzzard there are so many to tune in to and just be still with. I practice my mindfulness whilst out in nature, walking, touching, looking - it brings an amazing connection and it is so healing. I connect with Mother Earth every day and work with her in my healing of others. I connect to the moon and the sun, the stars and the clouds they all have their own energy all of it healing if you allow it in. I watch the spiders make their webs, the insects running around in the earth, the water flowing down the river turning into little whirlpools then continuing its journey. I connect with the cows and the sheep in the fields and of course with Magic my dog who is always with me when I am out there. I then spend time with the horses just sat with them, being in the moment, listening to them, feeling them and being at peace.
I have struggled with a lot of the Fibro Facebook pages and forums because so many people are in so much pain and depressed and can’t see a way out and they are very caught in arguments why they can’t do things when something is suggested, there is always a reason why not; I also found there was often a battle between people comparing symptoms and those who insist they are so much worse than someone else. I completely understand how people get stuck in this mindset but it isn’t something I could be around or read because reading those things have a negative impact on your own mind, it is worth remembering this as we often turn to these forums for support but unintentionally they can do the opposite so be careful about who you connect with for your own well being. Positivity is key to recovery, it may sound silly but when I set up a Facebook account again I ensured I had lots of positive picture posts to read and would look at them every morning, it really set me up for the day, I also ensured all those friends on my account were positive people – we all have bad days and I am there to support my friends through this but there are people who are negative all the time about everything and anything and I can’t be around that. Look at the energy you surround yourself with because it has a huge impact on your own feelings and way of being.
I want people to know just how bad things got and then just how much that has turned around in a relatively short space of time, it's not perfect in fact I spent nearly 4 weeks in hospital in April/May 2015 due to an infection and lack of immune system but I didn't even get slightly depressed or guilty! I am excited about the future. I am loving life and all I want to do is go out healing with horses every day, all day – and you know what I can!!!
My dream is to have my own herd of horses one day to help me heal others, to introduce people to the healing of the horses combined with nature, to experience mindfulness with the horses, I want to continue going out healing people, horses and other animals and I believe one day it will happen, but there is no rush I am enjoying each and every moment. This year I have started my Shamanic Practitioners course and so I am currently obsessed with drumming – if anyone wants a healing drumming session let me know!!
Do get in touch if you want to discuss learning how to live with Fibro/ME or other chronic fatigue issues. I am always happy to talk about it. I also offer healing to people and have a great understanding of what life is like with these issues and very in tune with how to help support the body and emotions through it.