So, yesterday I spent the whole afternoon talking to the lovely Community OT's who are setting things in motion for me to have some bath aids and leg lifters etc. I need to wait for their stores department to contact me before they come round to install them. I had to go through how my current weakness and issues affects my day to day living, including bathing, dressing and mobilising in and around the bungalow. They need me to take some photo's of steps and access areas which I will hopefully do when I have a modicum of energy.
We also discussed wheelchairs, and after the first suggestion about going to Island mobility to be measured up for one they decided in their second call that I should ask my GP or MS Nurse to request a mobility assessment, so it looks like I need to ring the surgery tomorrow to arrange this.
Scarily, whilst talking on the phone my voice box just seemed to seize up and I totally lost the ability to speak. For all intents and purposes it sounded like I was getting upset and it was just faltering, but no, I just could not get the words out. I had to end the call and have a drink after which it returned.
Having ended that call at 4 pm I was drained and took to my bed, only to receive another phone call, this time from my GP surgery - apparently my Hb is now down to 81mg/l lower than it was before my last blood transfusion. Also my white cell count is raised which is indicative of an infection. ?UTI, ?Chest infection. He asked me to go in at 6 pm to see his colleague who was the duty doctor. I had to request their wheelchair as knew my legs would not cope at that time of the day. She checked me over and found my chest to be clear and my blood pressure 135/65 ish. She also prescribed some antibiotics and printed off some blood forms for Grouping and Cross matching for another blood transfusion. She couldn't contact anyone at the hospital to arrange this so will get a colleague to do it in the morning.
Today, a GP rang at 8.15!! to say he was having difficulties booking the transfusion but would keep trying. He rang back later to say he had managed to book it for 9.30 am next Thursday at the Chemotherapy unit (Phew, at least they know what they are doing there!) with me having my blood test at the surgery at 8.45 am on Tuesday.
Knowing these early starts would be impossible in my current state we decided to take the plunge to order a lightweight wheelchair online which will fold up and fit in the boot of the car, plus it should arrive on Monday so I will have it for my blood test on Tuesday morning. I know the OT dept probably won't agree, but for us it is urgent, I really can't cope if my legs are going to give way and if I am going to need transfusions every month.
The GP's and Oncologist seem to agree that this anaemia is due to chronic disease - is this going to be my life from now on?
I will email the OT's on Monday as they are closed over the weekend.
Watch this space.
