Sue’s Journal 1

Tuesday 14th April,2020

In “Buffy The Vampire Slayer” (the film not the series; that was rubbish) pre-menstrual cramps were Buffy’s warning signal for approaching vampires. I think about this every time I awaken to sore eyes. Because eye health is my warning signal. A warning signal, not for anything as exciting as vampires I might add, although a damn site harder to deal with (at least that’s how Buffy made it look).

My eyes are my bodies warning, that if I don’t act quickly, my destiny is a flare. The pandemic and social distancing, has shut off any face to face support for my mental health, however I have been coping quite well, my mood is up and down, my anxiety is higher than usual, but that’s to be expected. This is the first sign my physical health is playing up.

I was diagnosed with arthritis and secondary fibromyalgia when I didn’t recover from a hysterectomy at 36. I had a number of gynae issues, which had gone misdiagnosed for 10 years, so I had a full hysterectomy including my ovaries, a decision I have come to deeply regret. No-one can possibly prepare you for a surgical menopause at 36, and to be fair to myself, my 60+year old male Consultant barely tried! Early menopause is not talked about nearly as much as it should be (I am hoping to change that).

So, I have fibromyalgia. Typing, or saying, that sentence still feels me with shame. I’ve watched the eye rolls. It strangely has a reputation, without people actually knowing what it is. Not just friends, or family but professionals too. GP’s have on their face a “what’s wrong with you this time” smile, and my 60+ year old male Endocrinologist informed me, last time he saw me, that was no such thing as fibro! Apparently, it is just down to much stress! (thanks for your unqualified opinion mate, but stick to the hormones, will you).

Problem for me is, I WAS one of those people! I used to work for the NHS, the last job being within a chronic fatigue service. We shared our treatment rooms with the chronic pain clinic. I learned about chronic fatigue syndrome and fibro; yet I strongly believed that they were caused by mental health problems. You see, I had first-hand experience with the physical symptoms caused by depression; headaches, fatigue, aches and pains. It wasn’t’ that I didn’t believe them, it was just I knew the power of bad mental health.

How wrong was I.

An incoming flare is the reason I’m struggling to open my eyes. When fibro decides to flare, my eyes suddenly act like I have conjunctivitis, something I have always suffered with. EXCEPT there are no visible signs of conjunctivitis – I cannot open my eyes, as they are stuck together, my vision is blurry, and my eyes itch, and irritate me, it’s like having grit in both eyes – yet nothing visually, no pink eyes, no sign of the normally quite obvious infection. Sometimes they might swell a bit, and it looks like I haven’t slept for a week, or have had a real heavy night, but basically – no visible signs; just the symptoms.

And that last statement sums up fibro. In agony? Nothing to see. Foggy head? You just come across as slow and stupid. Fatigue? Can’t have, your bloods are ‘normal’. Both the people in your life and the professionals, have only your word to go on. Many think like I did – and how can I blame them? In fact, for the first two years I still did! I would be crying in agony, barely able to get myself to the toilet, all the time still refusing to accept it was real. I was convinced I would bounce back, if I just kept going, keep fighting. I suppose some of that refusal, was a desire to find a different diagnosis, something that could be fixed, something I would be offered treatment for, so I could get back to feeling like me again.

You fight until you get better. That’s what you are supposed to do when you are unwell. Drag yourself up, ignore the pain. Resist resting, just drink caffeine. Keep working at all costs. This attitude got me through being a single mother, whilst getting a late education, and having a career, however it was that same attitude, and attention to career success, and a total disregard for looking after myself, that resulted in fibro. I had an extremely deep core belief (thanks mum) that career success always comes first, that you never take time off, even if the GP tells you to.

That and the fact that I had been ignoring all sorts of physical and mental problems too. When I was in my 20’s I turned down so many offers of talking therapy (no 18-month waiting list in those days!) because I didn’t want to divulge to my employer, that I had mental health issues. I could not think of another excuse for disappearing for a couple of hours each week.

In my thirties I was so focused on trying to succeed in motherhood and work, that I turned down an operation, twice, that could have revealed all of my gynae problems, because I didn’t want the ‘inconvenience’ of recovery time (plus the Consultant said something like “well, there is absolutely nothing wrong with you, scans are completely clear, but I suppose we could open you up and have a look” – I mean who is saying yes to that?).

For 3 whole years, after my hysterectomy, I fought with everything I had, and you know what? Fibro fought back, and as I know now, that is exactly what happens when you fight. To be fair to myself, I didn’t actually have many other tools in my toolkit at the time. My tools had been mainly ‘distract’ by work or partying, or to ‘relieve’ anxiety by obsessively cleaning. I think the latter was less about stress relief, and more about control. I could control my surroundings, even if nothing else, (not even internally) whilst outwardly saying “look at my clean, neat, tidy house/desk, everything MUST be under control. Or so I thought.

Close to the end of 2019, at 39 years old, I met Claire. I know this sounds corny but that was the beginning of a new life. That’s honestly how it feels. I was deeply unhappy from 2016 onwards, today I don’t feel that way, and that is thanks to Muddy Care, Claire, Lee and every other participant on the pilot.

Its not like I didn’t know that my diet was crap, or that I dipped in and out of an exercise routine, or that my social life had taken a massive nose dive since moving to Wales from London. I had already been introduced to a gratitude list, and I had read “The Power of Now” years before. In fact, I had read a whole bookcase worth of self-help books. I even started meditating, along with yoga, just before I came to Wales in 2017, after reading “Buddhism for Dummies”.

Trouble is, just like the exercise routine, my use of all these tools had been extremely sporadic, the only thing that had really stuck was yoga. I think it was yoga that got me through the first two years in Wales, and it least I was building up muscle to support my useless joints. The agony before yoga was honestly unbearable. I urge anyone with joint problems to try yoga, and heat, a heated blanket is more effective than any pill.

What Claire and Muddy Care did, was bring everything together for me. She gave me the tools and information I needed, in an accessible way, and finally my body and mind started getting everything it had been screaming for. Claire now tells us to listen for our body whispering to us, to think I didn’t even know when it was screaming at me! I would try to push through the pain barrier, or at least hold on in there until I finished the hoovering, then spend the next 30 minutes laying on the floor in agony!

Claire has slowly drip fed all the information I had been ignoring, mixed with the most important part of health and wellness – being social! And having fun! Learning ways to adapt activities so they are still possible, and giving me the confidence to surf, something I would have been too scared to do when perfectly healthy! I now have a community of people, that are not only friends, they are incredibly important and special friendships. We all have so much love and understanding for one another.

Having friends that do not judge you, even if you strip in the middle of the road whilst on a bike ride (hot flush!), or have to cancel plans at the last minute, because they really do understand, I have learnt is an extremely important ingredient for a healthy life.

So in the morning when my eyes feel sore to open, I listen. I know that I have a choice; I can either slow things down, and find out what my body needs, or I can ignore it, and end up in a full-on flare. There is something I can control after all. In fact, its always been the only thing I can. You can’t change or control other people and the things that happen, and you certainly can’t change what you have already been through, but you do control your thoughts, and therefore your feelings, and your behaviour. It is vital to understand, that you do have control over the way you see ‘what is’ (as in your circumstances), and accepting ‘what is’ without wanting it to be something different. I have learnt that the smaller the gap between the two, the more content I feel.

I decide a day of rest is required, then I scan for any clues as to why I’m beginning to flare. I listen, and this morning my body has a lot to say. I know I am stressed, who isn’t in a pandemic? I think we are all suffering, and worrying, about our love ones. Anything else? Actually, my sleep pattern is all over the place, due to a breast cancer scare, meaning I had to stop my HRT, wait 6 weeks to find out if I had cancer, and start it again. Not only was I waking from a hot sweat several times a night, having no estrogen increases your cortisol production, add that to worry that they may have cancelled my appointment because of COVID, and you start to understand why sleep has been quite scarce. I know my body works best with 8 hours, with a routine roughly 11-7.

Now I think about it, food has also been scarce. My diet is seriously suffering due to lack of fresh fruit and vegetables, thankfully I have finally managed to secure a Tesco slot. I always have my shopping delivered, as I am unable to walk round and lift heavy items. Currently this is far from easy…I wonder if the supermarkets have considered those of us with a blue badge, who usually rely on their service?

My thoughts return to today. I hear Claire’s voice in my head saying “Just concentrate on three things”. Okay so the plan for today is to get to the bathroom and brush my teeth (yes, that counts), meditate and have a nice long bath. I check in with the Muddy Care community via our COVID WhatsApp group, as we have done every day since lockdown, and I get a few more suggestions, and a lot of love and support from them. I miss our Sunday activities; however, we are staying in touch virtually, in all sorts of ways. I have a bowl of banana, blackberries and pineapple for breakfast and take my morning coffee outside. I try not to look at my phone and instead just be at one with nature (something else Muddy Care has taught this city girl). The sky is clear, and seems more blue than usual, the birds sing softly, and I am reminded how grateful I am to live in such a beautiful place. I have finally learnt that things can wait.

I just concentrate on my three tasks for the day. The meditation sooths my mind whilst the warm bath helps with my back and joints. I put on comfy PJ’s, switch on my electric throw and do some reading. Before, I would have felt like a failure for today, as I would have set myself unreachable targets. I would have ended the day feeling lazy and selfish, instead I’m feeling relaxed and better than I did this morning.

Today I know that when my body whispers, I need to listen, that when I need some TLC I can do that for myself, and that it is far from selfish. If I don’t look after me, how can I look after anyone else? If necessary, I shall do the same tomorrow, and for as long as my body needs.

It just so happens, that after a good night’s sleep, I do wake up feeling a little better. Well enough to have a shower, meditate, and do some yoga in the morning. In the afternoon, my rheumatologist calls me, and so does my CPN (mental health nurse) her support has also helped me tremendously on this journey. Although all of my usual hospital clinics have been cancelled, they have all been in contact by phone or video call, which I am grateful for.

Apparently, Einstein’s definition of insanity is to keep doing the same things but expecting different results. If you are trying to beat your chronic illness by fighting it, by no means give up, but instead concentrate on what you can do differently for your health and well-being. In Muddy Care we talk about the 6 facets of health and wellbeing –

Physical - Mental - Social – Spiritual – Emotional – Environment

I think most people realise there is more to health than just your physical health. However, what I didn’t realise, was that they are all connected. To explain this connection to us, Claire showed us a visual representation of this connection.

(Rankin Dr.L, 2012)

I have gone from fighting and existing to listening and living. I am forever grateful for my CPN, Claire, Muddy Care and all the experiences we have had, and the many more to come. You have helped me make a life worth living.