I wrote this in 2007 to help friends understand why I couldn't be on every committee and Board I used to be on.
The hardest part about IH for me is that I can't do everything I used to be able to do. I used to be a fireball. I used to run non-stop from morning to night. I worked full time as an architect and still do. I used to be on many committees at church and in professional organizations. I was president of a state women's organization. I never forgot anyone's birthday. Now, a day at work exhausts me - physically and mentally. It is all I can do to handle one outside thing and I don't always handle it very well. I have had to give up most everything else. I just don't have the energy anymore.
My brain thinks differently, too. Between the pressure and the headaches and the head-drug, I just think a few beats slower. It is frustrating and I struggle to keep it from being demoralizing.
I have a headache most every day. On a pain scale of 1 to 10, 0 being no pain and 10 being the end or my rope, most days, I'm at a 2 - 4. I can handle that. I can have short spikes up to 5 -6 most weeks that last several hours. Once a month or so, I'll have a day at about a 7. During a day I can have what I call lightening strikes that are 7 - 9's that last about 3 -4 seconds.
I've learned to just forge ahead and ignore them as best I can.
I work hard to deal with the mental and emotional issues of having a chronic illness. It is a daily struggle to handle the internal self talk about all I've lost to IH, to not smack the people who think because I don't complain I must be better (or cured...), to keep my dreams about my future alive, to keep hope for joy and love alive, and just to make sure I am working hard to be ME and use the energy I do have on things that bring me joy. I want to be sure I use my talents to make my life good and happy and useful.
I happen to have IH. I don’t want it to become who I AM.
I am very lucky that the drugs control it and I don't need brain surgery in form of a shunt. It is scary waiting for the day that ends, though. It may not ever come. It may be next month. The brain is a smart bugger and for a lot of people, it learns to adapt around the drugs. I hope it learns how to STOP doing this. :)
It is hard for people to understand. I look fine. I seem fine. I still work. I’m not doubled over in pain. I must be doing better. A number of very sweet and well meaning people don’t seem to understand why I’m not doing 5k’s anymore or why I’m not as completely organized as I used to be. People don’t understand why I won’t lead groups or organizations anymore. They are flabbergasted that I say "no" now. They seem to think I’m being lazy. It is hard to explain that my brain is just different now. I just don’t have the mental or physical stamina I used to have.
Even exercise makes me ill. Very. I swim a few days a week, as long as the head doesn’t talk back too loudly. I walk on the treadmill when I can. Exercise intolerance is pretty common.
But it is scary. What will I do that will make the head mad? It is hard sometimes to want to do anything because I am afraid it will make my head hurt or it will exhaust me. I have to watch that or I'll spend my life watching the world turn without me.
But the truth is, I can’t go all day like I used to be able to. The heat of summer is dangerous for me. Getting overly tired is dangerous for me. It isn’t merely an inconvenience. My brain is put under tremendous physical pressure and that is dangerous. Brain damage can occur. The spinal fluid bathes the optic nerves so a spike in pressure could crush an optic nerve and render me blind. It is hard to live with that fear.
People understand cancer. People don’t understand this. They can’t see this. If I haven’t mentioned it in a while, they think I’m cured. But, it may not ever go away. This is something I will probably live with for the rest of my life. My life is different now. But it is good. I still have so much. I am very lucky. And I am grateful.