At last, a couple of good days for Julie, she has had a bit more energy and has been able to get out and about for a bit. This not only makes her feel better but it helps lift my spirits as well. We have also taken the step of buying a wheelchair so that on long days and visits to the hospital it will make life easier. Also long shopping trips (is there any other type when out with women!!) are easier for Julie as she doesn’t have the worry of having to disappoint anyone by coming home early, plus it gives me somewhere to dump the shopping.
We know that it will not last but hey who cares, take it while it lasts and be grateful.
As I mentioned in a previous blog we have been having an issue with one of our *ologists, well thanks to making a complaint (never be afraid, as the carer or patient, to question and complain with doctors and *ologists they are working for you, so make sure you get the best out of them) it seems to have given them the kick up the arse they needed. Tomorrow we are off to get a referral to a local Neurologist to see if there are any worries on that score, also with having to travel to Perth (3hrs away) it has now been put on our records that we only get the 11:30am appointment rather than the 08:20am appointment we originally had, that meant getting up at 03:30am to travel. So small wins but wins never the less. We are also going to get to talk to someone about recent MRI and blood results, which never seem to get discussed…..Hoorah!!
As the carer it is going to seem like a never ending battle, but being mentally strong and physically fit (my body is a temple……………..okay it is crumbling and sagging a bit!) helps. Also get as much help as you can, definitely talk to an occupational therapist about gadgets for around the house, we have got rails in the shower, the wheelchair, and am looking at getting them back to look at putting a side rail on or by the bed, so that Julie can settle herself before getting up and walking (oh and she has a couple of walking sticks if needed), don’t be proud, take what you can get.
Okay until next time – chin up, stiff upper lip and all that