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My blogging mojo is on the blink a bit lately. Life feels a bit repetitive and my vitality is a bit drained.
I am on the whole feeling a bit blah.
My tiredness has disappeared enough to mostly feel normal, except when I do something. Heaven forbid. I manage work okay for the most part but my weekends need to be nice and restful. Doing something on the weekend leaves me needing a weekend to recover. And by doing something I mean going out for dinner and having one drink and being in bed by 11. Or walking around a street market for a couple of hours. Ridiculous. This illness is supposed to be manageable and I am supposed to be able to lead a perfectly normal life and no one is supposed to even be able to realise there is anything wrong with me. Why am I not able to achieve this? My specialist is not at all concerned by anything I am experiencing and I am left feeling lazy because I am feeling tired and blah and something that describes the feelings of confused/hypochrondiac-ish/annoyed-because-I'm-ill-but-don't-look-ill-and-therefore-can't-reap-the-benefits-of-sympathy . How incredibly fucked up is that? Yes, I'm ill and yes I look normal and yes it's great that you're treating me normal but I want someone to realise that I'm incredibly tired and everything is getting way toohardbasket on the two weeks I am home by myself. (On the one week MR is home he is being super rockish as always and doing LOTS for me and being entirely understanding of everything and encouraging me to relax on the couch while he makes dinner each night)
I don't want to blog about feeling blah though, or about my meds for some reason causing side effects that are starting more than three months after beginning them. This is not how it is supposed to happen. After three months the side effects are supposed to disappear, not begin. Namely a blotchy and (thankfully) nonitchy rash across my tummy and sides that my specialist thinks is caused by my drugs and not to worry about it. But it's ugly! I feel unattractive and Blah. And then there's the occasional throwing up after taking my tablet so violently that that I burst the blood vessels in the skin around my eyes and have little red dots in a mask across my face for the next 24-48 hours. Specialist's suggestion? Take anti nausea tablets an hour before you have your medication. Go and get this brand that is available over the counter. But wait. It is not available over the counter which means I have to go to the doctor and spend more money just to get a script written out. *Sigh* And I don't feel nauseous until after taking my tablet and not every day but I don't know what causes it so I am going to have to take it every day which seems like unneccesary drug taking to me. But throwing up your dinner on random nights is not cool. And even uncooler is stupid burst blood vessels coupled with blotchy rash making me feel super unattractive and BLAH.
But.
I don't want to blog about that. And I don't want this blog to turn into an account of my life with Leukaemia because I am more than that. Eventually.
I am trying to keep in mind that there are so many people out there worse off than me. That a rash and occasional throwing up is not going to kill me. That my drugs are doing the job, even though my body is rebelling. That I don't have to have chemotherapy and a bone marrow transplant. That really I have nothing to whinge about.
Because I don't.
But boy do I want to.
Note: If you got this far, well done and apologies. This was not the post I started out to write but it turns out it was the post that needed to be written. Perhaps it's time to actually ring the Leukaemia Foundation and find a support group?
7 comments:
Yes, I definitely think you need someone with a similar experience to talk to. I so wish I lived around the corner so I could actually help you out with feeling a little less alone.
All I can suggest is to keep talking, don't be ashamed that your blog is about your Leukemia, LET IT BE the diary of a person with Leukemia! We want to hear about your progress, and sympathise with you about your set backs. And read about all the other things in between. (My diary started as a craft blog, and now the only thing I get time to blog about is music, and that's really just to keep in the loop!) We want to know what there is to know about you, with no cover ups.
Give yourself permission to be.
Love ya,
Wendy xx
You poor things, I know how you feel. That's it, pretty much!! Even after almost 11 years I am still having difficulty balancing things. Have you thought of taking some minerals and vitamins? I take some as the drugs depletes them from my body. Support Group here is not all sad and stuffy, it's a social outing for lunch, and some speakers, but the nurse/person in charge where you are should be able to give you help, or direct you to some. Good luck.
You are being very strong and positive and you are most definately allowed to winge. If there is support out there then why not take it and you know where here if you ever need to vent. Or a virtual hug xxx
Hi,
Please don't be so hard on yourself. Maybe talking to someone who has been in the same situation may help.
Good luck.
Yes. Me thinks it is time to get a support group... because it is always good to have company when things are tough and people that can say "they understand" having experienced it is always good too.
Sounds like you're tired of being tired. Which is a difficult place to be mentally - try to acknowledge it and don't feel guilty when you lounging on the couch. That's what you need. The people around you understand - you need to too!
I'm sorry you are feeling so blah, you have that right to feel that way, to want to feel normal and not to feel tired anymore. Being sick really isn't fun, it stinks! I hope you get to have a chat to some others who know how you feel and that it helps to get through this difficult time. Take care.
Blogger wouldn't let me comment until tonight but I just wanted to say we don't mind you being blah, thats what friends are for. Sounds like you have had a horrible couple of days so rest up and get on that phone....i'm dying to hear how the grocery order goes? We don't get that here we live to far away so I have to take the kids to the supermarket every Saturday...that should cheer you up imagining that and let me tell you it IS a challenge :-)
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