Level-Up: Part 21

Every Sunday (I know it’s Friday) I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

I’m two days early with Part 21, but this week’s lesson has been so clear that I figured I’d just write about it today while it’s on my mind.

Following a fortnight caught in a cycle of heightened vertigo spells and intense fatigue, a few days of rest seemed to go some way to restore my physical energy. This was also helped along by a slight improvement in the weather. I’ve mentioned several times how much wobblier I feel during heavy weather and a winter defined by rain storms and flooding has done me no favours. This week brought a few days that truly felt like spring. The air was so clear and fresh. While walking is still something I have to do carefully and consciously, there’s no doubt that taking wind, rain and low cloud out of the equation makes a massive difference.

I’m always looking for mile markers; things that prove to myself and to others that I’m working hard to manoeuvre around the hand I’ve been dealt. This week one popped out of nowhere. Late on Monday afternoon I could feel a bit of cabin fever setting  in. Those few days of rest had been entirely necessary but I missed being busier and getting out. On Monday I felt strong enough to take a walk, so I headed out for a short stroll to the local shops.

TweetI tweeted that I was curing my itch for fresh air with the walk and, as I was shuffling down the street with my walking stick, I suddenly wondered how I ever managed to stay sane through some three and a half years of cabin fever. I should point out that I wasn’t entirely housebound during those years. But by the time I’d climbed into a cab to work, struggled through the day, then got a cab home again, I was too physically and mentally drained to manage anything else. The weekends tended to be saved for any recovery time I could glean before the next five days of exhaustion started again. It’s impossible to explain how very small my world became. Only a handful of those who were there will really appreciate what this illness did to my everyday life and what it stole.  Being outdoors for any period of time was quite rare. That’s why I took immense joy from getting caught in a hail storm the other day. It had been so long since I’d felt it stinging on my skin. I felt caged in my body. Sometimes, I still do. I am under no illusion that I don’t still have some fairly major restrictions. But I have some flexibility in working around them now.

I asked myself the same ‘sanity’ question when I accidentally screwed up my repeat prescription this week and ended up taking an over the counter sleeping pill rather than my prescription one. I take 10mg of Amitriptyline at night to stop me noticing that I’m getting dizzy in my sleep. It by no means gives me a glorious night’s rest, but it keeps me drowsy enough that when the movement wakes me up I’m not wide awake and can get back to sleep quicker. Sominex, which is an over the counter tablet I used to take regularly, was a very poor alternative while I waited for my prescription. I was wide awake at 5am with no chance of getting back to sleep. It made me thankful that, even though I don’t have a perfect solution, sleep is better now than the years I spent literally dragging my body around. There is improvement.

In answer to my own question, I don’t think I did stay sane. If I had, I wouldn’t have needed my course of counselling so badly. I wouldn’t have lashed out at people. I wouldn’t have been so angry that the illness had shrunk my life down and kept me away from places I needed to be and people I love. Leaving my office-based job to work freelance was by far one of the most difficult decisions I have ever made. I question it regularly. But being there kept my life small. It took so much from me in every way that I didn’t stand a chance in replenishing some of the mobility, activity and people my disability had taken away. In a way, it made a difficult illness impossible, because when I say that all I was able to do was go to work and come home again, that really was it. I’m amazed more people didn’t get bored with me.

To be able to decide that I needed fresh air and get some may not seem like a big deal for many. Most people just walk out of the door when they want to go out. They don’t even think about it. I haven’t been able to do that for a long time. I may not be able to do it every day or exactly when I want to. I may still feel held back from things I want to do, the places I want to be and a lot of the people I want to hug, but looking back to where I was just five months ago, I’ve come a long way. It gives me a glimmer of hope that in another five months I’ll have been able to progress a little further and my life will have grown closer to what I’d like it to be. I’m not getting there as quickly as I want to, but I already feel I’ve lost too much time to this disability, so my patience is always a little stretched with it.  This week, however, highlighted another important mile marker I’ve shuffled past and proved that I’m not allowing an unwelcome visitor to beat me.

hope

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