Lovely Day

Had a really lovely day today, had a visit from E today. Managed to catch up on all the gossip and just generally chat. I ended up on oxygen though as I suddenly couldn’t breathe and my face started going south! E’s used to it now so she just asked if I was tired. I was tired but as I explained to her if I get in a bad way when I’m having fun I dont care! Its when I wake up crappy I get really annoyed.

We taught E how to play poker today! I have the feeling she could get quite mercenary if there was money involved! We just need to convert S now and we could have litte poker tournaments! It was hard going for me as I kept losing the plot and not remembering which cards I had and what cards were winning hands. Really good fun though, even with the oxygen concentrator chugging away in the background!

I emailed Oxford today to ask if the blood tests had come back as its 6 weeks now. Hopefully I will get a response soon. The physio department at the local hospital contacted me today for the stress test as Ive had to put it off again. The physio was really lovely and very switched on. Couldn’t understand why I was being given oxygen at home but had no respiratory consultant and that no investigations were taking place. She couldn’t understand why the GP thought there would be an issue with the PCT. She is going to contact the Respiratory Consultants secretary and ask if he will refer me to London or at least write to my GP to see if he can push things along. So at last something maybe happening.

Talking to the physio today restored my faith in the people that work in the NHS. That there are people that actually care and will do their best for a patient.
What a lovely day ……

Still Waiting ……

It will be 6 weeks on Wednesday since I had my blood drawn for tests and Im still non the wiser as to if anything has shown up in them. MG seems to be the disease that is all about waiting. Blood tests take an age, neurologists adopt a wait and see approach, its all just waiting, waiting, waiting. Never any doing!

Im also waiting to hear whether or not my request to be seen by a specialist in London will be allowed. I have no idea how long it takes to get the Primary Care Trusts approval or for my GP to contact the Oxford Dr. Again more waiting in limbo land and still no effective treatment.

On a positive note I saw my 18 week old Nephew on Saturday. I haven’t seen him since he was 4 weeks old and hes huge now! I held him and played with him for around an hour. I have been struggling to use my arms ever since. It shocks me at how weak I have become that I struggle to hold a baby. I dont mind my arms being weak, it was a good use of energy and happy to pay the price. I get more upset when I have wasted energy on something that doesn’t bring rewards or if I wake up weak and feeble. That feels dreadfully unfair.