Chronic Illness Never Takes a Day Off…(funny pic)
Following the previous day’s adventures, not surprisingly I woke with a headache. It wasn’t a full blown migraine but the dull ache that you feel when you haven’t slept enough. I know very well what this particular headache signifies. As the day went on I felt fatigue and weakness on top of the headache plus nausea and pounding head pain if I moved too much.
I really wanted to continue helping at my sister’s house with the renovations but I knew that any level of physical exertion was going to push me into a full attack. So I stayed at home, kept all the lights turned off and generally took it easy.
At one point I did go out for a few groceries. I spent about half an hour in the shop before going home. By the time I put the groceries away I felt nauseous and my head was pounding. I had to rest for about an hour before I felt well enough to get up and move again. I managed the remainder of the day doing some small household tasks in between rest breaks. As long as I moved slowly and didn’t do too much at once I was able to get a few things done.
By the evening things had improved somewhat and with a little help from my foodie son I was able to put a nice meal on the table. Fillet steak with sautéed mushrooms, asparagus and creamy garlic sauce with a good Shiraz.
I think the two days give good examples of the choices that I have to make constantly due to migraine. Anyone with a chronic illness could probably tell you a similar story. Like the spoon theory says every choice comes with a cost.
So what drives these choices? Why on Thursday when I felt well did I choose to try and pack as many activities as possible while knowing full well what the likely cost was going to be? For me many of my choices are driven by guilt. I know that its not justified. I know that having migraine is not my fault nor is it something that is really under my control. I still feel the guilt. There are so many ways I fail the people I love every day.
House renovations: my Family are incredible support network. Every time there’s been a crisis in my life my family have rallied to support. This is something I can absolutely rely on. At the moment my sister has a crisis of her own and I feel like I should have space in my life to help. I feel like since I don’t have a job I should be able to spend all of my spare time assisting her with with the renovation project. Unfortunately due to migraine this is just impossible. So on this good day I wanted to achieve as much for her as I possibly could. In one week I have managed to help her for two afternoons. This feels to me like an absolute failure.
Cooking dinner: I have a tendency to express my love using food. If someone feels sad I want to cook for them. If someone feel sick I want to cook for them. If there’s any kind of special occasion I want to host the celebration.
If I don’t put healthy meals in front of my family each day I feel like I have let them down. I feel like I’ve neglected my responsibilities as a mother and partner. In particular at the moment when I have a house full of people I strongly feel that as the person in the household with no job it is my responsibility to put the meal on the table every night. In reality I am able to do this once or twice a week at best. And I feel enormous guilt for this.
Spending time with Logan: Poor Logan. He really does bear the brunt of my illness. The plans that we have to cancel, events he has to attend without me, the times he’s come to pick me up because I am too sick to drive home. He picks up all the little tasks of running a household when I’m too sick to do them. He cooks, he does the washing, he remembers when bins go out, he knows when we are out of milk or cat food or any of another million things that I’m oblivious to because I can’t leave my dark room and I’m unable to think clearly.
He never complains and he’s always kind. He will bring me a cup of tea in bed each morning while I wake up and get ready for the day. He checks on me when I’m in the darkened room and brings me anything I need. He understands when I’m not able to go with him into noisy or brightly lit environments. He’s a good man and I’m lucky to have him.
So of course if there is any possibility that I can spend some time with Logan enjoying the things that he loves then I am going to do that. Because I can do this so rarely and for this I feel guilt.
I’m feeling the loss of my spoons today (if you haven’t heard of the Spoon Theory of chronic illness have a read here https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).
Yesterday was a great day. All the spoons I could eat. I woke with a clear head, zero pain and felt fully alert. In other words I felt like the old, normal me. Lately I get one or two days a week where I feel like this. It’s not great but it’s been worse.
So I decided to pack in as much as I could while I could. I knew it would probably cost me but I have reasons which I will get to.
First of all there was an appointment to choose and order the FL41 glasses . This went well. Although the tinting is not covered by Medicare or private health insurance I had a package bonus which covered some of the cost. It ended up costing me only $50 out of pocket. The lenses are made by Zeiss in Germany so will take a few weeks but I’m excited!
Next I had some work to do. My sister is renovating her house on a budget and with a deadline. In my family this means all hands on deck to help. I spent a few hours scraping floors, washing walls and prepping for painting.
I dashed home about 6pm and made dinner. The same sister plus her two kids are staying with us at the moment so I was cooking for six. There wasn’t much in the fridge to work with and I was pushed for time (not to mention money) so a big pot of pasta carbonara did the job (I had some Keto friendly edamame spaghetti for myself). We had a really nice family dinner. The kind where everybody joins the conversation, shares the details of their day and has a good laugh together. I love being well enough to create an atmosphere for this to happen. I wish I could this more often.
Time for a quick shower and change to go out. My partner Logan is a singer/guitarist and usually goes to an open mic night every other Thursday. While I love hearing him sing and enjoy the company on these nights the reality is that I am rarely able to go. The gig is in a small pub. If I have any level of migraine sensitivity I cannot stand the competing background noise nor the volume of the music.
But this was a good day! No sensitivity to noise or light. No throbbing pain in my head. No brain fog or confusion. My mind felt sharp and I was able to joke and banter with my friends and enjoy the music. Logan sang and played beautifully and at one point had an awesome bluesy jam with a couple of the other musicians. I had a ball! We stayed until closing and got home around 12.30 am.
My sister and her friend were still awake when we got home so we sat and had a chat for a while, catching up on the events of the day and checking out the amazing Eurovision entry from Australian opera singer Kate Miller-Heidke.
I got to bed around 2.00am, tired but grateful for what I had accomplished.
Yesterday I had a routine eye test before ordering some new glasses. One of the scans showed some signs of thinning on the retina in my right eye. The optometrist said that this could be an early sign of glaucoma and requested I do another test of my peripheral vision. This test showed signs of mild vision loss but I will need to repeat this on another day for confirmation.
Late stage glaucoma involves blurred vision, loss of peripheral vision and difficulties in adjusting to low light. Fortunately it can usually be slowed down with early detection and treatment. So hopefully this will just be another item on my already impressive list of medications.
While waiting I read an article about glaucoma in a magazine. Guess what one of the risk factors is? That’s right – my good buddy migraine! So not only am I at a higher risk for depression, anxiety, stroke, fibromyalgia and arthritis to name a few (https://migraineagain.com/comorbidities-migraine-isnt-your-only-problem/) I can now add glaucoma to the list. Ahh good times.
I had also decided to ask about FL-41 tinting for these new glasses. There seems to be some evidence that these can be helpful for some people with migraine ( for example https://www.theraspecs.com/blog/tinted-glasses-for-migraines-research-shows-fl41-tint-is-better/). They are not common in Australia so the opticians assistant didn’t know what I was talking about. After some discussion with her colleagues she said no, they could not do that tint.
So back home for some googling and I found https://optomize.com.au . Once again the first lady I spoke to had never heard of them. However she offered to look into it further and get back to me. Which she did soon afterward (I was super impressed with the customer service!) One of the labs that they use can do the tint but it’s not something they are commonly asked for. She was not sure how pricing will go with my health insurance but I’m going to see them in a couple of days and we will work it out together and see what I can afford.
I’m quite excited about these glasses. Light sensitivity is probably the worst of my migraine symptoms, even worse than the headache pain. I have a tried a generic blue tint from Specsavers which helps a little but FL-41 is mentioned a lot in the online community and has been clinically tested for migraine. Hopefully these will turn out to be a useful addition to the migraine survival kit. I’ll be sure to let you know.
Thanks for joining me!
Good company in a journey makes the way seem shorter. — Izaak Walton