This Saturday is the first day of Fall, mind you, we already had a few days of snow so Fall is being a bit of a dick this year.
And I lost the summer
I lost the summer somewhere between pain and vertigo. This vertigo without the Ativan I am now on is brutal. I’m pretty non-functional. I have to lay down most of the day, after anything, even sitting too long. With Ativan it suppresses it a bit for about 4 hours. It still gets worse after doing things or driving. Still gets worse as the day goes on. Still have to rest. But, it makes it easier to bear.
I had been really, really looking forward to summer. BBQs and sitting outside by the fire. Visting with people. Going to events.
I didn’t have any fires, well we did, I just wasn’t out there enjoying them. I didn’t visit much at all and when I did I got so severe I had to leave. I missed events like a friends wedding.
The whole summer was a blur of Rest. Just resting. Laying down because the vertigo was less that way. Trying to fit things in, and getting worse as a result. Every little thing taking substantial effort to acheieve but needed substantial rest as a consequence.
Issues with the vertigo:
- I cannot read except when the symptoms are mild first thing in the morning. But not a lot. Not like reading for an hour. More like a page or two.
- Can’t it upright too long
- Can’t stand too long or really much at all
- Writing is difficult, takes a lot of time, and I can’t edit at all
- Thinking is like thinking through mud. And sometimes I just zone out. I get confused. I don’t remember things
- I cannot drive at all like this. And car rides make me worse
- Too much motion makes me worse, so TV can be problematic.
- Begun to use a cane on bad days or bad parts of the day to stablize myself. On really bad days it doesn’t help. Laying down is all that can be done on really bad days
- Begun to use my phone and lap top laying down to do things to distract myself
- Begun to really carefully control what I do and the downtime I need. A whole new level of pacing now.
- I have been able to socialize a bit with medication, but still out of it, woozy, dizzy and it gets worse the longer I am out and about. So keep it short. But I was getting severely isolated. And that is not good at all. So I venture out carefully, fully medicated, for a few hours.
This much anticipated summer though has drifted away during this time of low functionality.
I thought I’d be better by now. Vertigo wise, anyway. And I am not. It is frustrating. And it makes me a bit angry. And a bit worried. I thought maybe since I was home I could do some free online learning to pass the time. But I can’t. I don’t have the energy. My cognitive faculties are impaired by the symptoms. I can’t learn like this. I can’t even retain normal information. There are things I hoped to do to help pass the time that just are not possible. I thought I would exercise again, but that has proven to be impossible as well. It feels… stgnant. Like I just am not able to do things I would want to to cope or pass the time.
I do understand in these times of low functionality self-care is vital. We just have to take care of ourselves. And the rest is necessary. And we can try to do the small things that distract us a bit. And yeah, it is a small life. A narrow life. A lot of things are just out of reach during that time. But I do mourn the lost summer.
When November comes it will be a year since this constant vertigo and dizziness has been around. And still do not understand if it is vestibular migraine or some other type of vertigo. Still have no idea when it will stop… if it is like my vestibular bouts of the past.
And I wonder once again ‘am I stuck like this?’ And I wonder what I will do if I am. How I will adapt to it. Like I have adapted by using a mobility device. What other things will I have to adjust and change in order to live a bit better like this? And I don’t know the answer. But I have to stop waiting. Waiting for the vertigo to stop. Waiting to get better. No point in that. This is the longest, by far, bout of vertigo I have ever had. It could be months… it could be years of it. I have no way of knowing. So I have to find ways to adjust a cope.
Things and ways I am coping:
- I use my cane as needed now
- On my spouse’s birthday we were supposed to go to dinner with my mom but it was a bad day for me. So mom came to us with Chinese food.
- I understand any activity requires a certain amount of rest. So I carefully plan my usable hours in the day and the resulting rest needed.
- I can go on the computer in the morning but being upright and tracking motion does get to me, so after that I also need rest. But it is a time for writing and blogging.
- Doing things laying down, like engaging in social media for this blog and such are ways I can do some things without worsening symptoms.
- Evening and night are the worse. Things really can’t get done or be done at this time. And as a result if I go out to socialize I have to rest before I do and take my medications later than usual in order to have some ability to interact with others and be upright. And I need to bring my cane for when it deteriorates.
I just have to be very careful. Get things done slowly and very paced. And carefully. Understand my usable hours are very minimal. And I will adapt. We endure the waves of chronic illness. When things get bad we get through it. We persevere. Like I say ‘It can’t rain all the time’. A lot of that is the reilience we have learned over time.