Feeling Normal

Feeling Normal

A few months ago I chatted with an MS friend and we talked about how we’d forgotten what it was like to wake up and feel well. That feeling when you wake up, rested, throw back the covers and leap out of bed. I know I used to do it. I remember working a shift in my local pub till around 11.30pm and then get back out of bed at 5.30am to go to work at the nursing home that was my second job. I partied hard, worked hard and sometimes I wonder if I didn't do too much! That was the last time I remember getting out of bed in the morning and feeling well; I didn't even think about it. I never appreciated it, until now.

A fortnight ago I went to hospital and had some injections in my spine. I was not looking forward to them and as soon as the doctor mentioned them my face must have been a picture because he immediately offered a general anesthetic. It was the only way it was ever going to happen! I blogged about the experience, which wasn't a picnic, but now two weeks on I can look back on it with some perspective. For a week the pain was much worse. I took oramorph for three days to get out of bed and had a few pajama days. I was grumpy, and bad tempered and cursed the day I’d ever let a needle near my spine. I kept wondering if it was really worth it and had a discussion with a friend about whether any of the interventions worked enough. We’d been talking side effects and I was still in pain. I imagined this holy grail, Shangri-La style place where I could be looked after while I stopped taking all my tablets and then started again with a clean slate.

In this ridiculous fantasy (which I now spend more time day-dreaming about then I do about George Clooney) I stay in this place that looks like the Himalaya. Lovely Buddhist monks bring me special tea that stops the withdrawal and makes me feel peaceful. Obviously, this being a fantasy, I come out of the experience healthy, but also glowing and 3 stone later with a body like Scarlett Johansson. I don’t want much do I?

Instead of Buddhist monks I have my pain consultant Dr EL. He is short, funny and perceptive man who gets pain. He walks with a pronounced swing in his gait – his left leg is either a prosthetic or he has an artificial hip that doesn't quite roll properly in the joint. He never talks about his own disability, he never uses it to motivate me with comparisons to my own condition, and he treats me with respect. When we have a consultation I feel like we’re working together, not that he is doing treatments to me. On the day of my injections I went down to xray and he was waiting there ready to do my injections. We talked about where they would be and he joked that he wished I’d had a tattoo over the pressure points so he could see where to put them – this is an idea I might adopt actually and put stars everywhere he needs one! I noticed he struggled to put on his gown because of the rigidity in his own spine and just like me he couldn't reach round and tie his gown properly. Thankfully for him he was wearing his trousers and shirt underneath, whereas I’d had my arse hanging out most of the day!

Somehow, putting myself in the hands of someone who understands me feels so much better. There is no judgement, no questioning and he never looks skeptical. He just believes me. Whereas I have to fight my corner with the benefits system, with my neurologist, with people I meet and for five years with my ex-husband, I never have to fight with him. I explain it and he accepts it. He just believes my lived experience.

So, now, two weeks on I am cannot believe the difference in me. For the last three nights I have slept through the night, I have not needed to sleep in the day and I can move. My knees, which were so painful I couldn't stand up without making noises or uttering swear words, are smooth and support me. I don’t have the nagging pain in the bottom of my heel that was making me want to chop off my right foot. There is no electrical charge down the back of my leg and no cramp in my lower spine and down into my bottom. This morning I woke and sat up without thinking about how I was going to do it. I surprised myself by sitting up with no problems. I had a clear head and could bend my neck. I swept back the covers and while I wouldn't call it leaping out of bed, there was certainly a smoother and easier movement. I ache a little. Imagine the pain after taking a long bike ride or going back to the gym after a break. It’s useful pain that tells me my muscles are working, instead of a nagging toothache in every joint which is so debilitating I can’t even walk to the gate. Since the injections have kicked in I have started to feel stronger. It’s not a cure, but it is close to making life tolerable. I can manage life like this. I can cope. Now I need to write a lovely note to my doctor  to thank him, because instead of using his own pain to intimidate or outdo his patients, he uses it to understand and soothe us. He is the best kind of doctor.