Chronic Illness and the Reward of Achievement

While at an appointment for pain management, the physiotherapist told me something so utterly profound, it has changed the way I manage my life.

When you are chronically ill, you do not feel a reward for doing stuff, achieving stuff. You only feel punishment from your body for doing / achieving the thing, whether that’s by increased fatigue or increased pain. So we don’t actually want to do anything because we are punished for it.

And suddenly so much of my life makes sense. I don’t want to do little tasks, like hanging up washing, because it will exacerbate my fatigue and pain considerably. I don’t even want to un-pack the dishwasher for the same reason. Some days I don’t want to get off the couch, because walking is going to cause pain and fatigue.

Over the last couple of days I have trialled a new thing. It’s a bit of a triple whammy. Instead of trying to remember to do things, and when they need to be done by, I have downloaded a task management app on my phone (and chromebook) and begun adding things to it. Right now I’m trying to de-clutter my lounge, so I’ve scheduled myself a small task to do each day, something bite-sized that I can actually achieve – today was ‘clear the top of the desk’. Yesterday was ‘clear the floor around the desk. Tomorrow I have ‘organise the top shelf behind the desk’ and the day after I have ‘organise the bottom shelf behind the desk’. Now, admittedly, some of this organising and clearing is ‘I don’t know where to put this thing and I don’t really have anywhere to put it right now so I’m going to move it further into the de-cluttering area’, but the majority of it is actually organising things and putting them in their proper place. Once I have completed my task, I get to ‘tick’ it off on my app, and then administer the reward!

This is where it got a bit tricky. What should I reward myself with? Should I have a scaled reward system, so the bigger the task, the greater the reward? What can I give myself that won’t be so expensive so as to be unsustainable?

I asked a good friend of mine who suggested I look into love languages to figure out what will work best for me. So off I went to research love languages, and then self-love languages (which apparently can be different), to discover that I am a physical contact and quality time kind of gal. No real surprises there. But even with that information I was still stumped. I don’t exactly feel comfortable giving myself a hug, self-massages are out because they’re painful rather than relaxing, and I already have excessive amounts of down time.

But I did realise that I could give myself small amounts of very high quality relaxation time by listening to meditation music (courtesy of some random list on Spotify, bless other people doing the work for you!) and lighting a scented candle and just staring at it. It’s a small circle of calm in my otherwise hectic life, and provides my body with powerful relaxation, which reduces the pain and fatigue. It’s also my favourite scented candle.

For other, bigger tasks, I’m thinking about things like a hot shower with music and scented candles, and then massaging my favourite skincare products in. I have a delicious foot moisturiser that relieves tension and pain, and a face cream that helps to soothe my trigeminal neuralgia. For really big tasks, maybe a massage, or maybe I rope my amazing human into giving me a head rub or extra cuddles.

It took hours to work through this, but it is well worth having a think about. I’m hoping that if I can provide enough positive reinforcement for completed tasks, then getting the motivation to complete tasks will be easier. Because I’m tired of being punished. It’s time to turn the tables.

The Possibility of Mast Cell Activation Syndrome as a Component of Fibromyalgia

My flatmate has chronic sinusitis and congested nose. He has had this for years. He’s also had insomnia and really bad quality sleep for years. He’s had all of this medically explored, he’s tried a lot of drugs, and nothing has really helped.

Until he found some mention of mast cells and decided to experiment with reducing his histamine levels. His nose cleared up and all of a sudden his sleep quality improved. His supplements arrived and his chronic sinusitis began to clear up, too. So he kept googling.

He found an article mentioning mast cell activation as a potential cause of central sensitisation – i.e. everything hurts and all sensory input is bad – which is one of the main components of fibromyalgia. So he passed the information off to me and, thinking this could be interesting, I started researching.

Mast cells are the harbingers of inflammation in our body. They release up to 200 different inflammatory mediators, known as cytokines, which do everything from increasing blood vessel permeability to depolarising nerve endings. Mast cells are everywhere in your body, all through your connective tissue, and they don’t care about the blood-brain barrier, either. When they activate, they can either fully degranulate (that is, release all of the granules they hold in their cytoplasm at once) or they can selectively degranulate. A full degranulation can result in anaphylaxis, while a selective degranulation can result in … any combination of symptoms, really. They respond to anything and everything, from an allergen in the environment (hello hay fever, yes, it’s mast cells that are causing that allergic reaction) to an infection (bacterial, viral, parasite, etc.), all the way through to emotional stress and temperature changes.

Inappropriate mast cell activation has been, as I mentioned earlier, linked with central sensitisation, one of the particularly nasty components of fibromyalgia. Mast cells have been linked with bloating and abdominal cramps associated with non-coeliacs gluten/wheat intolerance, neuropathic pain and fatigue … you think it and it’s probably on the list. It’s not incredibly well understood, as many things relating to the immune system are, and it seems like it may be a contributing factor (or the causative factor, in some cases) in conditions like fibromyalgia or chronic fatigue syndrome.

Fibromyalgia and chronic fatigue syndrome are a description of symptoms, rather than a description of the underlying disease process, which is what makes these conditions so varied, and therefore so difficult to manage and treat, because each person requires individualised treatment. In many cases, and especially in mine, the diagnosis of fibromyalgia is reached and that’s it. There’s no looking into any underlying causative agents, it just is.

But during my google-fu, I’ve realised that a lot of my symptoms, including my overreaction to vaccinations, suddenly make sense through the lens of an inappropriate mast cell activation component. All I need to do is too much one day, and the next day I have a sore throat and a bad post nasal drip on top of extra body pain.

While the diagnosis for mast cell activation disorder is a pain in the backside (and not always particularly accurate), the treatment is something I’m able to do myself … or at least a trial of a few things to see if there’s any improvement. So I have quercetin supplements on their way, which may help to stabilise mast cells, along with a combo supplement with chinese skullcap extract. These are the two supplements I have come across that seem to be the initial ‘go to’ for treatment, so I’ll give those a whirl and see what happens.

Excitingly, despite ordering them only last week, they should be here today! I’ll let you all know how it goes over the next couple of weeks.

The Difference Between Abuse And Care

Photo by Sydney Sims on Unsplash

I had a very interesting discovery the other day.

I had a friend make a joke on one of my posts that suggested I might have a diagnosis other than fibromyalgia. She’s suggested this particular diagnosis ad nauseam in the past. I didn’t take it well. I was upset and antsy and, after some prompting from another friend, I politely set a boundary of can we please not with this topic, and how it makes me feel.

And she apologised. She apologised, explained she had been trying to make a joke about how she could empathise with my experiences because she has the other diagnosis, and the injury I had experienced is one she could imagine herself doing. Then she apologised for missing the mark with the joke. And none of it was ‘I’m sorry you feel that way’ or anything like that, it was a true and genuine apology, taking responsibility for what she said and how that made me feel.

It was freeing in a way I cannot put into words. Suddenly I wasn’t offended by the joke, and I could feel her care and consideration for me. It increased my love and respect for her a thousandfold.

This is totally different to the friend I lost. During my diagnosis process for both fibromyalgia and trigeminal neuralgia, when the doctor and I were both pretty sure what I had but were doing the formalities, she would send me messages with all sorts of different things I could have. Constantly. I rarely mentioned any of my symptoms past ‘ow’. She never once asked about them. And she was saying ‘oh what about this? and this? you could have this!’ I repeatedly told her we were pretty confident it was fibromyalgia (or trigeminal neuralgia) and it felt like she was dismissing my knowledge and my doctor’s knowledge of the situation.

She never apologised. She would only say ‘I just don’t want you to have x because it’s chronic and it’s awful’. That is not a place of care. That is a place of control. Which pretty much summed up our whole relationship.

Because of my long history of being abused (right from infancy through to this latest ‘friend’), I have difficulty with identifying when people come from a place of care and love. It’s often only once I begin to establish a boundary, and they accept it and apologise for stepping on it that I can tell the difference.

It has started healing a little part of me that was very raw.

I’m Not Okay

Photo by K. Mitch Hodge on Unsplash

I’m not okay today.

I did too much. Way too much, and now I’m paying for it with full body aches.

When I’m this fatigued – and it is a bone deep dragging fatigue that pulls every bit of energy from your muscles and leaves you in agony – my good mood inevitably slides away to a numbness I associate with my depression.

I will shortly haul myself off the couch and put on my fluffy cosy socks. Then I’ll turn the heatpump on and cuddle up on the couch and read terrible fanfiction until the claws of fatigue retract from my muscles. It is important to coddle yourself on bad days.

I’m not okay, but I know that I will be.

I Broke My Triangular Fibrocartilage Complex

Photo by Markus Spiske on Unsplash

Three weeks ago I broke the triangular fibrocartilage complex in my right wrist. This is, unfortunately, my dominant hand.

The triangular fibrocartilage complex as a series of cartilage, evidenced by the name, and also ligaments. It’s on the little finger side of the wrist and it deals with the interaction between your ulna and the bones in your wrist. It plays a crucial role in allowing you to turn your wrist, because the cartilage provides a smooth surface for the bones to interact over. It also prevents your bones from clunking together.

So it’s kind of integral to the use of your right arm. Which means in the middle of the year of all my practical work I do not have use of my right arm. And I will not have use of my arm for quite some time.

I don’t see an orthopaedic surgeon until September. After that, I need an MRI for them to identify where the damage is and how bad it is, and then I’ll be booked in for surgery. Damage to the cartilage between the ulna and the wrist bones must be surgically repaired. It does not go away with rest. So after surgery I will be in a cast for 7 weeks, and then I have physiotherapy for 6 to 8 weeks.

So in reality, it’s looking like I won’t have use of my right arm for the rest of the year. This also means I can’t actually type – I’m using Google dictation to write this, and I’m adding in the punctuation manually. It’s an interesting experience because I’m used to my fingers doing the thinking, instead of my mouth. I’m not used to speaking my thoughts out loud, and I’m certainly not used to writing this out loud, some of my most private and personal thoughts, available for the world to read but not for those in my life. In a sense it’s easier this way.

I’m having to relearn a lot of things now, using my left hand. I’ve never been even vaguely ambidextrous, and so using my left-hand for things is somewhat complicated. I have spent the last week sulking and generally feeling very sorry for myself over this. It’s hard not to when the hits just keep coming and they don’t stop coming. I don’t feel like I’ve had a break. I feel like every year there is something new, some new way of impact in my life and my ability to do things. It sucks, and I have to let myself feel that.

Now, though, I am back on my feet, more or less. I’m sorting out an MRI in advance of the orthopaedic surgeon’s appointment, I have sorted out physiotherapy already, and I’m going to interview a personal trainer to help me make sure I don’t lose muscle mass. And to improve my non-existent muscle mass. Ah the joys of doing nothing for 2 years. And being on Tegretol, which I’m now off (yay), but I still haven’t lost any of the weight I got while I was on Tegretol (not so yay).

It’s unpleasant, the damage to the joint. Not only is it painful to turn my wrist, but there is a distinct clicking which is always excruciatingly painful when it happens. I also can’t use my right hand to push off objects because that puts pressure on that joint, and I can only very carefully lift things. I can’t turn my key in my car. I can’t crochet. I can’t type, I struggle to use a mouse, and that’s all just pants.

So over the next few weeks I’m going to be figuring out what on earth I can do, because I will go insane if I don’t have anything to do for the rest of the year.