While I would choose having 'moderate' M.E. over severe any day (obviously), moderate or slightly (even temporarily) improved health comes with it's own set of headaches and frustrations - mostly social.
For example, I've been doing fairly decently lately, I've also found a type of work I can do successfully on a part-time from home (bed) basis. This means I am out in the world a bit more than I have been for a decade (for an hour or two a couple times a week). But being ill and disabled while "looking great" comes with a lot of social frustrations.
Honestly, people just don't get that I'm very very sick. I understand that initially this is not their fault given I have two 'invisible' illnesses. But if I tell them over and over (even some friends and family) it doesn't seem to make a bit of difference; not only that, I feel as if I come across as a whiner/exaggerator. And since I don't look on death's door they assume (or their behaviour suggests they assume) I am doing fine and coping. Either that or they don't care.
I feel so alone and misunderstood and unsupported lately. I think being forced into isolation by illness makes my infrequent human interactions carry all the more weight when they probably shouldn't. And to be quite honest, a couple things have happened this year that have brought me to realise that I rank lower in importance in people's lives than I thought. I've accepted it is the way it is.
I remember when I was first ill and still doing my job, I had a similar realization. At the time I felt so important to the organization I worked for. But then when I just couldn't manage due to illness, I was quickly replaced by someone else and realized I really wasn't all that essential in the big scheme of things.
I'm aware that this is all very self-indulgent. Obviously people have their own lives, own issues, heartaches, challenges to live and work though. I don't expect the world to revolve around me. And to be fair, how much of my limited time and energy goes to caring about the people I do have in my life (outside my dad) - putting energy into their issues and concerns? Showing I care? Very little.
It's just I'm lonely and alone much of the time. Lately I vacillate between anger towards everyone I come in contact with and everything they do, to utter loneliness, grief, and borderline despair. I think some of this is due to the fact that while I'm doing more lately, I'm doing it while a raging war is going on in my body (flue ache, tachycardia, dizziness and lightheadedness, sore throat, internal tremors, weakness and agonizing fatigue). And this war is never seen, and rarely, if ever acknowledged (or for that matter believed).
Despite the loneliness, when I'm with people lately (e.g. my dog training friends) I find them difficult to be around for a number of reasons - they seem insensitive, uncaring, uninterested, petty, and honestly annoying.
A friend in an online support group I'm part of commented this week that at this point (given the length of illness and accessibility of information) it's not our job to educate people about our illnesses and the impacts of disability. I think this is especially true for friends and family. If they don't care enough or haven't taken the time at this point (after 16 years) to listen, research and/or read a little and educate themselves about what we suffer, that's not our job.
It's not that I mind thoughtful caring questions, I don't - it's just after 16 years I don't feel that it's fair I have to explain (over and over) or justify that I can 'look good' and still be sick, or that I can manage something one day and then crash horribly the next, or that I'm more than just really tired!
I'm crashed right now so especially prone to a pity party. I had a friend come visit over Labour day and we went camping for a night!!! It was awesome and amazing and I'm glad I went. On the other hand, one night is not really doable for me. It means two travel days in a row (an hour and 1/2 car ride) and packing and unpacking two days in a row (even with help this is crash making for me).
That said, it was an amazing time and I'm glad we went. I loved sitting on a rock looking at a beautiful lake, laying in the grass by a fire at night and seeing the Milky Way for the first time in a year, dipping/swimming in the clear cool water as the late summer sun beat down on us, and visiting with my amazing awesome friend.
However, I'm not sure I would do a 'one' night camping again. It would have to be a 2 nights at the least so I had a full day to just lay and rest and chill. That said, I took some amazing sunrise photos (many from my sleeping bag out the tent door). This lake (it's now my secret local spot - I've been twice) is just magical. I think the sky and water changed about 100 times int the 24 hours we were there.
This is a great example of the juxtaposition of this condition. On the one hand I am so grateful that I can do something like this despite illness, and I did manage to go. On the other hand, doing something like this comes at such a horrible price, and yet the cost is unseen, invisible, and unacknowledged. It leaves me feeling completely alone. Do you ever feel this way?
Enjoy the shots.
