Since then I've been just my typical low energy, fluey, sick self of the fall. Quite disabled to tell you the truth. I've been on two quick (30min) outings (with a chauffeur) in the last week and both were draining to the degree that the outings were miserable affairs.
I think I need to accept my home-boundness right now, but it's hard. I'm used to being able to go out once or twice a week without a crash if I play it right. At present, that just doesn't seem to be the case.
I'm pretty sure (80%) that I'm going to take a medical leave of absence from the PhD starting in the winter. I've got a meeting scheduled to discuss it with my supervisor in early December.
While I'm probably well enough to squeeze out a few hours of research a week, I just haven't had the motivation since the end of summer. I'm collecting grant money and doing nothing to earn it. It doesn't feel right. I can't justify taking the money.
I like that a leave is just that: a leave. I'm not quitting. I could start up again next fall if I'm doing better. It will be VERY hard to live purely off of the social services disability I receive, but I think/hope I can make it work....
You know, I've always felt guilt around not being able to work and receiving government $$$. I'm not sure if that will ever go away (unless I get better and am able to work). However, in the words of my specialist "you need to get over that".
One of my mantras living with this illness is "It's not my fault I'm sick" and "I didn't choose this". Actually, it really helps to remind myself (sometimes multiple times a day) of this.
- I don't want to be sick
- I'm not choosing to be sick
- I'm not actually lazy, or unmotivated, I'm sick
- I would love more than anything to work, earn a living, have a social life, hobbies, etc.
Chronic illness brings with it a lot of stigmatism (especially M.E.). We live in a society that valorizes strength, toughness, and overcoming challenges. People who get sick and don't get better (the chronically ill) don't really fit this ideal.
At the same time, living every day sick and enduring the pain/fatigue/weakness/suffering we do takes immense amounts of strength. But being a mostly invisible illness (one you can't see from the outside) only those of us who live this reality really understand how much strength and toughness is involved.
With the PhD I've been doing something concrete - albeit at my own pace - but it's given me some feelings of self worth. It will be interesting to navigate my better moments and hours without the work of the PhD hanging over me, but also providing productive activity for my goal-oriented self.
Do you ever feel guilt around aspects of being ill? How do you navigate those thoughts/feelings?
OH, Gail, I have felt a great deal of guilt over the years. When I became so ill I could not go places very often, I still had children at home...6 to be exact...5 of ours and a foster daughter...I missed games, concerts, etc and the youngest one only remembered me ill. Sadly, I could not bring any income into our family and did not apply for disability as I did not have a formal diagnosis from a medical doctor...and moved so often I did not have documentation for it. So, I feel guilt over not having worked for so many years and not bringing a second income into our family...and being in debt mostly due to my long term illness...and I STILL feel guilty because Joel is also sick but has to do so much for me...Oh, yeah, I can let guilt rule BUT I have been working on letting that go. I do try to treat myself the way I treat others.....with kindness and gentleness and care for myself the way I would care for those I love who are ill.
ReplyDeleteI know I did not make myself sick...but there is still this tiny part of me that whispers....you must be doing something wrong if you are not better....I had a practtioner tell me I WANT to be sick or I would be well. Seriously! I realized that I started to believe what she was telling me...BUT it is NOT true for me or for you.. The people we surround ourselves with need to be encouraging and supportive too.
I like the statements you speak to yourself. I think speaking outloud affirmations and statements of belief are so very helpful.
Sorry you are heading towards a temporary hold of finishing your PhD. It cannot be easy to make this decision. It is hard to face the reality of what is our lives and find a sense of peace within what we know to be true for now. I have been struggling with that lately a lot and the more I resist the more exhausted I am. I am rambling now, but just want you to know you are not alone~ I think it is very common to have guilt around all the aspects of being ill.
I was not chasing a phd (you go girl!) when I became ill, I was chasing two children and babysitting two year old twins. I then got a cold, then sicker, then 8 weeks later I literally couldn't get up. From that ambulance ride to today, my whole world has changed. I've had to mourn me and it hasn't been easy! Hardest thing i've ever had to do and am still doing it. I won't take assistance either but that may change if my home business does not pick up. Right now my husband is killing himself working two, yes TWO full time jobs to make our ends meet and have a little extra. He'd rather do that than have me keep getting into deep hard prednisone flares. I still have to make peace with it. I hear you loud and clear, we didn't aske for it. We are all trying to make the best of it. hang in there. Hugs. Tammy
ReplyDeleteThanks for your comment and thoughts, Renee. Oh yes, I can only imagine some of the guilt that might plague me if I couldn't be there for my children in the way I'd like. I feel that about my family and friends though...And that's a good point you make about being as kind to yourself as you would be to others. I think learning not to be ruled by guilt is one the the lesson's of this illness, don't you think?
ReplyDeleteTammy, it sounds like you have A LOT on your plate on top of the illness. My life has become quite small, outside the PhD I have almost no responsibilities left. But it's nice to know I'm not the only one that struggles with these feelings of guild over what I can't do....or feel I should be doing. I do know what you mean about the burden on others - in your case your husband working two jobs. With three of us in this house only one of us earns a living. I feel so bad for her so often...which is part of why the disability benefit is such a necessity as small as it is.
ReplyDeleteHi upnorth - I can relate to your post. I often feel guilty that my husband has to do so much for me. Growing up, I was an independent spirit and probably gave my parents grief with the amount of independence I demanded. I didn't want help with anything. Now I need help with so much. It's an adjustment, for sure.
ReplyDeleteAlyson, I was the same when I was young - annoyingly independent. You're right about the adjustment.
ReplyDeleteHey how are you doing these days?
Things have been up and down all year. I'm in the middle of a new health issue, losing hair and abnormal blood test results, but I've got an appointment with a specialist on Tuesday. I hope you're doing better these days!
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