HAWMC 2013 Day 18: Frustrations of Chronic Illness

 

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go.

I have been desperately looking back and trying to find a time in which I lashed out at someone. However, I am coming up with nothing. The truth is, I am just not that type of person. No, I do not lash at people, venting all of my frustrations, fear and anger about living with a neurological condition, which often negatively affects my life. Instead, I tend to direct all my anger and frustrations, inwards, bottling everything up, and instead of shouting at somebody, I often will have a cry into my pillow instead, often when my pain or the dizziness leaves me unable to sleep.

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Yes, living with chronic illness can be very frustrating. For even the healthy, sickness can bring upon a blanket of misery and frustration. However, that misery and frustration are exponentially multiplied when living with a condition which isn’t temporary and instead is permanent and steadily getting worse. I am finding more and more that the condition in which I live, the long-standing brain stem lesion, is leaving me feeling really fatigued. So fatigued that I often need a nap sometime during the day just to be able to function. This is very frustrating as I am only 27 years old – and needing to take a nap during the day isn’t something someone of my age should need! In addition, it also decreases the time in which I could be doing all the things that I really want to be doing in my spare time. It is extremely frustrating when running out of ‘spoons’ and not having any energy to be able to do the chores that really need doing or taking part in an activity that you particularly enjoy. Recently, I had to miss out on both of the two social groups that I attend every week as I was too unwell to go – very frustrating just having to stay in bed all day, and missing out on life.

One week, as I attended the group, I experienced a ‘funny turn’ and was suddenly taken very ill; and my Dad had to come and immediately collect me, even though I had only arrived several minutes before.  This was not only incredibly frustrating; for both me and my Dad; especially as I was looking forward to the group session, but I also found that this ‘relapse’ also knocked my confidence for future sessions of the group as it was always in the back of mind that this type of turn could happen again.

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How frustrating it is needing to conserve all the spoons that we can instead of doing everything that we want

It can also be very frustrating seeing everyone else on social networks living their life without any worries or problems, as well as seeing them and hearing details of them doing all those little things that you so desperately wish to do but are prevented from doing so because of the state of your health. These things can include seeing others on holiday, nights out, attending music concerts or festivals and so on. This is not to say we are not happy that others are enjoying themselves, seriously, we are really happy for them but is still really frustrating for us when we are unable to do the same.

For me, one of my frustrations of my chronic illness is not being able to access the stores I love. Many of the stores that I love or wish to visit (really want to go to ‘The Range’ to stock on craft products!) have high ceilings, which people who regularly visit the blog will know, is one of my main triggers for the episodes of vertigo that I regularly experience. This is extremely frustrating as for one I cannot visit these stores which I love, and if I did would leave me feeling unwell for a long period of time. And secondly, whenever I wish to purchase something from such stores, I have to instead rely on the internet, and also means I have to pay for postage and packing, therefore costing me even more money!

Another frustration is definitely being unable to make definitive plans with friends as we never know how we will feel on that particular day. On top of this, try living with a fluctuating condition, which changes how you feel in an instant. Even on the day you have the plans, and think you feel fine, symptoms may begin just before you are due to meet your friends, resulting in you having to cancel. This results in feelings of guilt in having to cancel.

Frustrating!

However as much as all of these situations can lead to intense sadness and frustrations; it does not help dealing with the chronic condition, and in fact can instead lead to depression. Therefore, maybe it is time to let all these frustrations and go look for the ‘silver lining’ in life…

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There are some of my frustrations with chronic illness; what are yours?  Please share your thoughts and comment below!!  I would love to hear some of your frustrations with chronic illness!  Let’s all vent and get some of the frustrations out!

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