Tuesday 31 March 2015

The Thing They Forget to Tell You

Something they forget to tell you in Serious Illness School is that it isn't all appointments and pharmacy trips and giving yourself needles at home when you'd rather be drinking tea. 

Sometimes it is doing really scary shit, and listening to hard metal at ten o'clock at night with both headphones in and the volume up as loud as it can go, trying to blow the memories out of your brain. Sometimes it's being surrounded by paperwork, pens, and voicemails, and being totally, utterly alone. Sometimes it's family and friends who absolutely cannot understand what you are going through because they weren't in that bed, they weren't on that floor, they didn't feel what you did and know what you knew and experienced what you experienced or saw what you saw. 

Sometimes it's going to every single appointment on your own, because someone else has to work. Sometimes it's making phone calls on your own. Sometimes it's dealing with someone else's ego, or someone else's limitations, or someone else's issues, when you are trying desperately to navigate a system and a serious medical issue of your own. 

Sometimes it's coming to terms with your own limitations, your own ego, your own issues, your own self that impedes the process. 

Sometimes it is just never easy.

Some things in life exist and tell us how strong we really are. Some things in life exist and tell us exactly how much it takes to break us into tiny little weeping pieces on the floor. Some things in life wear away everything we are and reduce us to a core of unbreakable stone, gradually worn away by the constant rain. 


Sunday 15 March 2015

Waiting for Spring

This was my first full winter with ICL, and I think the isolation really got to me. There were entire weeks this winter where the only adult I saw was my husband, where the only people I talked to other than my husband and kids were doctors, nurses, and home health care workers. Literally every single conversation I had with a living being not related to me revolved around health care.

It was extremely depressing, incredibly annoying, and very desperation-inducing. My pharmacist is now unfortunately aware of the intimate details of my struggle to provide unburnt French toast for my twins on the morning of the third Monday of January, and my local ID's receptionist understands in great detail the intricacies of elementary school bus drop-off for my son on cold winter afternoons.

Coming back to the world after weeks of being too sick to be in it sucks. There's always this feeling of a planet that moves at a different speed than you do. Always a fear that everyone has packed up and left while you were away, leaving you behind in the dust to start from scratch. Not everyone understands that you'll leave the world for a month (or two or three) and then want to come back like nothing ever happened.

But it's almost springtime now!

Spring means the isolation is almost over. Spring means being able to go outside, being able to meet friends in the clean, warm air where there isn't any chance of spreading or catching disease, being able to meet in a public place without coming home sick yet again. Spring means the end of flu season, RSV season, rotavirus season, gastro-enteritis season, H3N2 season, strep season, its-going-around-the-school season, cough-and-you'll-catch-it-season, community-acquired pneumonia season, respiratory infection of unknown origin season, and cold season. Spring!

Spring means hope again. A normal life, at least for a while. A walk outside with the twins. A breath of fresh air. A trip to the park. Safety. Peace. A place to sit without a ceiling. A chance to recover before dealing with the madness of winter again.

Friday 13 March 2015

Hey there! Are you like me?

Why am I here?

I'm looking for you, if you have the same medical condition I do.

Do you have Idiopathic CD4 lymphocytopenia?

I do too!

I've never met anyone who has the same strange lack of T cells that I do. Which isn't really all that surprising, given that ICL is pretty rare.

But maybe you have it!

If you do, leave a comment below. We can chat! It would be really cool to talk to someone else who has the same thing that I do.