At one in the afternoon it was time for an EEG, the man performing it was very nice but I’m not really sure what the purpose for it was. I have a very sensitive scalp so although he assured me I’ll feel no pain the marks he put on my head as he measured it was really painful. He stuck about 20 electrodes to my head with some sticky gel; it didn’t feel too bad but I was worried it would burn. So with all the electrodes attached I lay on the couch and was told to close my eyes. All I could focus on was the pain I could feel in my lower joints. They burned so much I imagined them being like popcorn and just bursting with the heat. I tried to stop my body from shaking and relax as I didn’t want to taint the exam but it was impossible. I was told to open and close my eyes throughout the 30 minute test. I have no idea why, the letter I received said I would be shown pictures but that didn’t happen. He took the electrodes off and I could feel, without even seeing or touching how bad my hair was going to be and I still had more tests to come. The technician tried to wipe it out and although he meant well my husband said it made it look worse.
I went to the toilet and brushed it through quickly forgetting about what a mess it was as the pain and weakness got worse. Just a side note, the Dyson hand dryers in the toilets at Kings College are equivalent to standing behind a jet engine, very good for its purpose, but if you have sensitive skin as I do, use some tissue to dry your hands. So after almost having the skin blown off my hands I became aware that I had to have a lumbar puncture very soon. I had heard such differing stories about them; some say its worse than child birth and others say it wasn’t too bad. What wasn’t clear is whether these people had a chronic disease or not or were on medication at the time. I didn’t know if it would be better or worse for me because not only do I have a few different chronic diseases I have also had to have some horribly painful tests to ascertain what was happening to my body when I first got ill.
I went into the room where the lumbar puncture was to take place and a young lady Dr walked in the room. She was perky and all fresh looking with a nice expensive jumper. She was really nice and more to the point gentle but she did make me feel like an absolute tramp. With my gross sticky hair, hunched back walk and face rash shining bright it was hard to feel anything but gross. Basically the process of a lumbar puncture for those that don’t know is just a series of needles that get bigger and bigger pushed one at a time into your lower back. Now I’m not sure if it was because I am on a Morphine patch as well as Tramadol that for me, it didn’t hurt that much. My husband was watching me through the whole procedure and said I only winced once when they put second anesthesia needle in. After that I felt nothing at all, I kept my body tight, not wanting to move but also waiting for the pain I had heard about to hit me. Fortunately it never did, my husband gave me the thumbs up to let me know I was draining and it was clear. He did say it was a very slow drip though, I don’t know if that’s significant in any way?
I do realise now though that I should have asked more questions, I have no idea what is going to happen next. I should have asked how long the results take and who they go to, it’s been about a week now and I still don’t know. I like to think that no news is good news but when you’re under so many different consultants that don’t communicate I worry that things get missed. Quite often a normal Dr Visit makes me anxious because yes, I am always being assessed, but then I worry that everything is attributed to something I already have and they may miss something else. It was a long day ending with another three hour train ride home but still I enjoyed it, I enjoy every day with my husband even ones filled with gross hair, pretty Dr’s in posh jumpers and very, very, long needles. The final surprise of the day when we got back was that out two boys had cleaned the entire house and even done a load of washing. I could smell the laundry conditioner as I walked through the door, they didn’t know how much concentrated conditioner to use. I didn’t care they’d used a lot just thanked my two wonderful boys for being so sweet and thinking not just of me, but of their dad who would have had to face it the next day. I am so lucky.
Thanks for reading.