Pain & Hospital Trips

Feeling pretty exhausted today but it has been kinda crazy, usually i sleep in the daytime as the light hurts my head more and also because i dont sleep well. Last night i had to sleep in the night as i needed to try and get into a normal sleep pattern for today and the days ahead, the pain was really bad and i kept waking up crying in pain; Simon soothed me off to sleep everytime and gave me hugs and painkillers when i was allowed them. Simon was very tired this morning as was i, because of the broken sleep; this is another reason i sleep in the daytime as Simon needs his sleep because he works. He did have the morning off work though to take me to the hospital.

We got to the hospital slightly early and booked into Outpatients and i was told that i had to go right to the other side of the hospital for my appointment, this wouldnt have been so much of a problem if i wasnt on crutches and hadnt had a very limited time to get over there. So we got there rather exhausted and was called in to see the Neurologist Nurse.

She seemed very nice, asked the usual questions about medications and such, asked how i was doing. The pain in my head had seemed to be getting somewhat better but in the last two weeks i have been getting more painful spikes and episodes and i told her this. She told me that i could increase the Topiramate i am on and wrote me a prescription to up it 125mg and then to 150mg if i need to, hopefully that will numb the pain more. She also advised me that my Neurologist Dr Clifford Jones is retiring, i was already aware of this information, but she said i would have to go see a Neurologist at Southlands Hospital in Shoreham which would probally just be a one off just to see her and so she can review me etc.

The Nurse is going to write a letter to my GP re everything we spoke about and also get Dr Clifford Jones to write about the headaches and the Fibromyalgia as my GP has been waiting for the letter from him since my last appointment with him in Decemeber and apparently needs this information before she can refer me to see a Physiotherapist or a Rhemotologist.

So hopefully the cogs regarding that will get moving shortly. The pain in my knees has eased ever so slightly but not that much, i keep forgetting to take the homeopathic medicine and need to get more into a routine.

Cant believe how fast this year has gone, i think when you are ill and have nothing to mark the days then time goes much faster, going out to my mums all day tomorrow i hope it doesnt leave me like it did last week when i went out all day, although i am not going to be doing much and just try and take it easy. Trying to learn to pace myself.. whether it works of course is a different matter.. when you spend your life doing things one way and then have to change its very hard..