Living with Fibromyalgia

LIVING WITH FIBROMYALGIA

Once again folks I have been struck down with another chronic, life-limiting incurable illness – this time it’s called Fibromyalgia. Six years ago my diagnosis was Lupus, an auto-immune disease which caused inflammation in my body, mostly in my joints, but the Lupus is now ‘inactive’ according to my blood test results. Instead, now it’s my nervous system that’s completely out of whack, so that I experience pain all over my body, in my nerves, tendons, muscles and around the joints. The fatigue has exploded into something that dominates my life even more than before, where the simplest task such as washing my hair, can leave me exhausted and feeling unable to lift my arms for hours afterwards.

So how do I respond to this new diagnosis? What resources do I have to help me deal with another chronic illness characterised by pain and fatigue? Well once again it’s permaculture design that has come to the rescue; I’ve found that permaculture gives me several helpful tools in my toolbox to enable me to approach my illness with an attitude of seeing the solution in the problem.natural patterns3

Part of the reason I have become so ill is due to the stressful events that had been thrown at me over the past 6 years. I was dealing with:

1 A new diagnosis of Lupus which was stressful in itself; my body was attacking itself and some people find this disease life-threatening when it attacks their vital organs – so was I under the same threat?

2 The trauma of caring for a father who was slowly dying of Parkinson’s and Dementia; I was losing him piece by piece until he finally passed away, a process which I found quite traumatic at every step of the way.

3 And while I was losing him, I was also living in a very stressful environment; the housing co-op where I was living at the time was full of conflict and challenging relationships, and I didn’t have the resources within me to meet the demands of what that required.

4 And then we moved house so we could finally live in a quiet stress-free environment, which is great now, but at the time this pushed me beyond my resources.

So what do you do when life has sucked all the energy out of you and you are quite literally in debt, your tanks are empty, and you’ve borrowed fuel from next year’s supply? As a permaculturalist I turn to nature for answers.

In nature you will not find any system that takes more energy inputs than it outputs in order to sustain itself. Nature is balanced – when mankind doesn’t interfere – so that each eco-system is able to effortlessly sustain itself; the inputs of rain and sun are used efficiently by plants and animals so that they live with a surplus of energy, able to output new growth and offspring each year.

To be clear, it’s not due to mismanagement of my energy that I am ill. It’s more due to being dealt a bad hand by life which has meant that I have less ‘fuel in the tank’ than the average person; I was born premature with a heart defect, small for my age while I grew up, susceptible to getting ill & exhausted by school work.. and so the pattern went on. If I had been born a Gazelle, I would have been the weakling of the herd and picked-off by predators by now! But I’m a human being and I am lucky enough to have healthcare and a cunning brain to design new ways of overcoming challenges.

So this is what I’ve come up with:DSCN3754

1 Zoning my life

I have less energy, therefore I cannot work outside of zone 0 for the foreseeable future. This means that I am not trying to do or create anything that isn’t inside my house. I can’t. This has meant:

- I have not yet designed my new garden, I am merely doing the most basic observation of it from my bedroom window. And if I do any gardening this year it will be inside zone 0 inside my conservatory.

- I am focusing only on activities that I can do each day inside the house that don’t overstretch me physically. For example sewing work or gentle decorating.

- I have handed over all commitments that involved working outside zone 0, including the community food growing project which I initiated in my old neighbourhood.

2 Living inside my energy envelope

The main treatment for Fibromyalgia is a balance of gentle exercise, rest and improved sleep and so I am using pacing techniques in my life in a way that builds up energy resources rather than depleting them. I have fought this ‘pacing lifestyle’ before because it sounds so boring, but this time round I am finding good results. Pacing is a way of dividing my day up into a timetable of activities and rest periods, and the strength of this solution is found in the variety and diversity of those activities and rest periods. The trick is in recognising which activities are physical, mental or emotional, and getting a balance between them all. For example my day might look like this:

Wake up & rest in bed for half hour (I wake up feeling exhausted)

MENTAL ACTIVITY – drinking herb tea while writing for 1 hour

PHYSICAL ACTIVITY – Make breakfast, clean kitchen & feed cats

REST – laying in bed rest with eyes closed

PHYSICAL/MENTAL ACTIVITY – sewing for 1 hour

PHYSICAL ACTIVITY – making lunch & eating it

REST – laying in bed with eyes closed

REST/MENTAL ACTIVITY – watching Youtube films in bed

PHYSICAL ACTIVITY – gentle walking for 50 minutes

EMOTIONAL ACTIVITY – chatting to a friend on the phone while resting on sofa

PHYSICAL ACTIVITY – repainting a door frame for 20 minutes

REST – cuddling cats on the sofa

PHYSICAL ACTIVITY – making dinner & eating with family

REST/MENTAL ACTIVITY – on sofa watching DVD’s with family

REST – Salt bath

Bed.

3 Small and slow solutions

Pacing myself this way also echo’s the permaculture principle of small and slow solutions. With a loose timetable like this each day, I can take tiny steps towards my goals. This means I always feel like I’m heading in the right direction – however slow – and my mental state remains positive and hopeful despite my limitations. We are slowly remodelling the house, while I continue to meet my creative work commitments, and I am not getting stressed about deadlines or pushing myself to do more, I am accepting of where I am and enjoying the process of slow creation.

4 Use natural resources

I now have a diverse number of natural remedies, therapies and supplements that I use to help me manage the pain, the quality of my sleep and wellbeing. Some of those include nerve tonic herbs, supplements that improve serotonin levels, acupuncture, gentle walks in nature, and salt baths._9-ODutWVfTfvUdZHwX3_qUwvWGirFxTUN4WkM7uNDM I respond so much better to these than to drugs, but I also have some strong pain killing drugs to help me on the really bad days too. I have needed the drugs less and less as I have found which natural remedies work best for me.

5 Build beneficial relationships

In an ecosystem there are billions of beneficial relationships between flora and fauna that sustain and build the system. In the same way I try to build positive and beneficial relationships with the people in my life.

I am very lucky that I have a husband who is wonderfully supportive, who enables me to do activities that I would otherwise be unable to do, such food shopping in a supermarket (he drives me there, pushes the trolley and lifts the heavy bags). Of course in any beneficial relationship it’s about mutual care and kindness, and I play my part by making sure on days when he works long hours I save my energy so that I can cook a good meal for us to enjoy together. Working together we are much stronger – we even managed to go to a gig together recently (we found benches at the back) which was a huge achievement and much fun.

My kids are older now and more independent – they can put their own washing in the machine, and clean up after themselves, and so I am less needed on a physical level and can instead enjoy the emotional engagement in their lives.

Although I find it hard to get to social events or spend hours chatting on the phone, I’m still able to maintain many friendships through email, messaging or FaceTime, and a few meet-ups with tea and cake. I have cut down the amount of time I spend on Facebook where I was fretting about political posts or worrying about people’s comments and opinions there – I found this to be a big drain on my energy.

I belong to a supportive forum online which is helpful on bad days when you need to chat so someone else with a similar illness. I have also had counselling through my GP which was tremendously supportive.Cb5z_voWAAAQGtq

I still like to maintain my relationship with nature by going on gentle walks. I am lucky to live on the edge of town with walks straight out into the countryside, so I make the most of that. I find it nourishes my soul to stand amongst the sheep listening to skylarks while little fluffy clouds drift overhead.

So there you have it. I don’t have all the answers or a miracle cure, and I’m learning new things all the time, but this is how I’m using permaculture tools to help me with my current challenges. I hope that over time, I will gradually build up a store of fuel in my tank so that one day I’ll be able to go hiking again or swimming. In the meantime I hope I have provided some food for thought for those who are also struggling with chronic health conditions. And I also hope to have given an insight into what it’s like to live with such limitations for those who have been blessed with good health.

 

6 Comments

  1. Sue Laverack
    Posted February 23, 2016 at 3:57 pm | Permalink

    I was so sorry to hear about this latest diagnosis of such a debilitating illness. As I read through the post I found myself nodding and agreeing – I nursed my late husband through chemotherapy and then heart failure and know the wisdom in your strategies. I hope you manage to keep positive and surround yourself with supportive rather than draining relationships and avoiding as much stress as possible, No doubt there will be ups and downs but if the overall trend is upwards that is good enough. I will look forward to hearing how you get on in future posts. Good luck.

  2. Posted February 23, 2016 at 5:52 pm | Permalink

    Thank you for your kind words Sue. Sorry to hear of your loss. I do feel positive that I now have a better place to live with less stress and I also have less other stresses going on in my life – now I’ll be able to rest and restore my energy. Here’s to onwards and upwards!

  3. Posted February 24, 2016 at 7:34 pm | Permalink

    I feel your frustration. I have a debilitating illness too, and made the exact same decision you did after coping with the care and death of my father. I live on 4 acres and will be starting the permaculture journey in May. Baby steps, as you can. I think you will find that eating healthy organic food (let food be your medicine) investing in good medicinal teas to bolster your health, and just letting yourself soak in the joy of being on your own land will do wonders for you! Best of luck, keep in touch -would love to hear how you’re progressing!

  4. Posted February 25, 2016 at 2:55 pm | Permalink

    Thank you! It’s lovely to hear from someone who’s been through a similar journey with loss of a loved one. Let me know how your permaculture design goes on your land. If you want to be notified of my posts by email, then click on the *follow button on the bottom left of your screen. I never share your info with other parties. It’s good to support each other!
    Flo

  5. Posted February 28, 2016 at 4:23 pm | Permalink

    My story has a lot of similarities to yours; Fibromyalgia with a lurking Lupus threat.
    I have been feeling a lot of guilt about living in Zone 0 this winter. Even brought the orphan lambs in the house in diaper so I could cope.
    Your story reminded me that I am doing the right thing. My day is so similar to yours.

    I cherish my life, my husband, my kid, my friends. Pushing negativity and drama out of my life, being thankful for what I have has been the best of therapy. Good luck with your journey.

  6. Posted February 29, 2016 at 8:25 pm | Permalink

    Aw! I love it that you brought your orphaned lambs indoors to look after. I dont have any livestock (we gave our hens away when we moved house last year) but I am very pleased to have two cute kittens to cuddle up with :)

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