June and July seem so far away now. Re-reading my blogs helps me remember how I was feeling and how I was managing.
Time kept doing what time does – moving. In the past couple of months I have had good days and difficult days but overall I have not experienced much improvement around my fatigue and pain.
First half of August I was looking forward to going away on holiday for 2 weeks. Hoping it would help me restore my health somewhat.
But 10 days before we were leaving I started having allergic reactions – waking up in the morning with swellings around my lips. Distorting my features until they’d calmed down and it would just look like I had a bit of filler put into my lips – good old 90’s style…
I had these allergic reactions back in 2012 but they disappeared when I went on a gluten free diet. Now they are back with a vengeance. When I wake up in the morning with a swelling I feel a bit panicky. I worry it will spread and the my mouth and throat will close up. I only have anti histamines to alleviate the swelling and it can take up to 24 hours before they are gone.
So I went on a low histamine diet which is a very limited diet and the idea is that after 2-4 weeks when your symptoms have calmed down you can re-introduce foods to see which ones trigger your body. In theory…
9 weeks later I am still on this bloody diet because I am still waking up with swellings. Granted not as often… The first week it was 3 times now its every couple of weeks. And I panic less now which is good but its still extremely uncomfortable and I feel knocked out for a day or two.
The holiday was amazing. It inspired my partner and I to make some changes to simplify our daily lives. But it didn’t make much difference to my physical state.
The way things have been going these past months makes me notice my attachment to outcome.
Hoping things will change.
Hoping the holiday would restore some of my energy.
Hoping that the diet would sort out whatever is going on with my allergies.
Hoping the taking it easy would relieve some of my pain.
Hoping the self-compassion would heal me from the inside…
Things have changed. Some things are better and some are worse. But overall I still feel crap. Like I’ve been run over by something enormous and it’s left my body feeling crushed. My muscles so fatigued that it feels like I’ve put on loads of weight and can’t really carry myself without working hard. Pain that comes and goes like somebody is squeezing my nerve tissue. Everything feeling tight, constricted and bruised.
And I resent that things have not gone as I hoped. Or planned?
Tired of managing my food.
Tired of doing my best.
Tired of resting.
Tired of being sensible.
Tired of waking up as sleepy as I was when I went to bed.
Tired of being tired.
Tired of coping.
Tired of hoping.
I have now officially been given a diagnosis of ME (myalgic encephalomyelitis see more HERE) and initially it felt like a relief. But it doesn’t change anything. Maybe apart from me being more accepting of having to rest.
Because things kept dragging on I started losing my ability to manage. Its amazing reading my blogs from June. I admire the clarity of mind I had back then. I miss that. I have realised that the hardest part of being so exhausted is losing my ability to think clearly. A clear head really does help me deal with things.
It seems the allergies (and probably having to take anti-histamines) and the continued pain has made my head increasingly fuzzy. My patience have been tried and stretched very thin. And I found myself just feeling angry and resentful most of the time.
Gone were all my good intention and all my lovely self-management skills.
I so desperately wanted things to change. And because things were not changing – at least not in the way I would have liked – hopelessness started setting in. I realised I would have to rethink how I am doing things. And I would need help to think things through because my head was not to be relied on too much. So I approached our local counselling services.
I managed to get offered high intensity therapy and am about half way through the course of sessions. CBT for anxiety and depression of all things! Luckily I get on with the therapist and I seem able to really make use of the space and what she has to offer. But it is bloody hard work. I’d forgotten have hard core it is – this therapy stuff.
Becoming aware of stuff and feeling stuff and sitting with stuff…
illustration by this awesome guy Charlie Mackesy