I had been at university were suddenly diverging dramatically from the course my life was on and I was left, isolated... stranded on my own island.
Despite having to be a bit different at university (regarding my disability - certain accommodations were made), I was generally able to keep up with my friends and to blend. To the point where there were large chunks of time during which I was able to feel part of the majority, and not overly defined by the M.E. and other health issues.
One of the reasons I have sought to start blogging again and to connect, via blogs and reading Phoenix Rising forum, with other PWME and PWCS is because living on that island is really tough. Part of me can cope really well with the physical limitations, the pain and the frustration; however, managing my own emotional and mental health has proved far harder. There is no NHS help - no counselling, and to be honest, really who can understand except others in a similar situation?
I feel so incredibly isolated these days. I would be lying if I said that going through childhood, through teenage years and becoming a young adult with chronic, debilitating health conditions has been something I have not emotionally struggled with. I have frequently keenly felt the distinction between me and my peer group - the things I cannot do, cannot have and cannot be. At times I have coped well with it, but more often than not, behind the closed front door, in the privacy of my family home, I have been disintegrating... There is no guidebook, no magic pill, or special words to take this hurt away or to make it better. There is a point where you take it inside yourself, because you cannot express it to your nearest and dearest, as it hurts them too much. They are hurting too. They are helpless about this situation, just like you are. So the hurt gets swallowed, and it sits there, eating me up. Most of the time I suppress it and lock it up safely, but sometimes it comes out and it hurts me again... because...
My life is extremely different from the majority of my peers. I find it hard to relate to my friends who are working, settling down and having children. I have become a realist. My dreams of having children are starting to become just that: dreams. I know of few women with M.E. who have had children post diagnosis. Of course there are some, but they are not the majority. There are so many considerations with having biological children when you are suffering from all these health problems. Not just a healthcare responsibility to yourself, but to the child. It is a massive decision that I believe (just my opinion) should be consciously made after much thought/research. Even from an adoption perspective - children require stability and energy. M.E. for sure does not naturally lend itself to either.
I was discussing this with a friend (who does not have M.E.) and I pointed out to her, that the conscious commitment of another human being (a partner - husband/wife/BF/GF) to sharing their life indefinitely with someone who is so sick, is a massive thing. My blood relatives had this situation foisted upon them; it sucks. Yet, to have someone who is not your blood... who is not linked to you, make that commitment to go through all these things with you and to be voluntarily impacted and restricted by them, in many ways just as you are, is enormous! Finding that person is hard when you are sick and partially housebound or housebound or totally bedbound. Your options for socialising/dating are severely limited or zilch.
I don't even know if I feel comfortable asking someone to do that... to commit to this life.
I want to be happy for my friends, to share in their lives and their joy. Yet, to do so is so hard and so painful, because it reminds me of everything I don't have. I am failing at it. My instinct is to shut myself away, and I feel that makes me a bad friend. I don't know how I can find a happy medium, without feeling bad/upset/stressed out.
I am just grateful that I do have some plans. I am focusing on finding ways to do things I enjoy - at least a little of the time. I am concentrating on learning new skills, and in doing so increasing the chances of me earning some money in the future. One step at a time.
In other news, I have been looking at heart rate monitors. I don't really have the money to get one, but am thinking I will get one at some point - maybe after a month or two. I was reading a lot about their role in helping M.E. sufferers to conserve energy and to pace, by not going over their anaerobic threshold. It makes sense to me, as I always have the feeling I am overdoing it by doing even simple tasks, and I know there is heart involvement. So this might be a useful tool to try. The downside is the cost and also trying to figure out which one is the most appropriate one for me given my budget.
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