The weather was gorgeous but a little breezy. The journey down was v straightforward, just down the A3.
Once in Portsmouth it wasn't as straight forward, the actual place we were going to, a physio centre, was hidden away on a business estate. It was a tiny building. Just consists of 3 rooms, the waiting room and 2 small office rooms. Quite oppressive really which only added to the stress levels I was feeling. It felt like I was taking my GCSE exams again and hadnt revised.
We took my chair and I was able to stay in it throughout the assessment, having my feet on the footplates eases the weight of my legs and in turn helps with the fatigue and back pain.
The lady was lovely, and she was only doing her job. I felt she tried to trip me up a couple of times, but again this is her job not her.
I fear I've over estimated how well I cope, trying to work out how far I can walk unaided. We agreed 40 metres, but I'd be unable to walk it again that day and I would be in incredible pain. But I would walk it as I'm buggered if I will give into this.
On the CAB forms it says if you stand with both feet on the floor and feel pain or fatigue. You are awarded Max points. She cleverly didnt mention pain or fatigue, just asked if I could get to the car and back to the desk (40 m)
So I am worried I've not painted a true enough picture of how I am, I dont want to make it sound unrealistic so I try and answer honestly. Husband agreed I was 100% honest and upfront with answers. I had no supporting evidence from gp or neurologist sadly, some say to show that as evidence. I'd imagine hell would freeze over before gp would help me :(
My Fate is in their hands now.
My next assessments is 6th of May. This is for the ESA claim so once again I shall have to jump hoops to try and get this. Why is it you feel you have to fight for something you need. Ive paid taxes for 14 years, when I need help I'm made to feel a burden and prove my illness is as debilitating as it is.
Afterwards as we were in Portsmouth and hadnt eaten yet and it was almost 2:45 we ventured towards gunwharf quays to find food.
We found a nice place, a bar/restaurant called Giraffe right next to the Spinnaker tower
Lunch was delicious. We walked round the shopping centre afterwards, I say walk, hubby pushed me as wheeling after eating is v uncomfortable! We didnt stay long, I was tired and it was so so hot and hardly a breeze at all on the coast, unusual as back home it was a v cold wind! So we headed home and got in just after 5. I headed straight to bed as I was freezing (I often get v cold when over tired and stressed) so I curled up in bed with a hot water bottle, my meds taken and before I knew it I was fast asleep!
I woke up periodically for the next 5 hours, took my bed time meds and then I was fast asleep until 10:50 the following morning!! 17 hours more or less fast asleep!
Its Tuesday today and I am still not fully recovered from it.
Its daft, I did nothing more than sit about and go in the car yet it exhausted me. This is whats so frustrating about this condition, the most mundane and normal tasks are exhausting.
I had another thing happen last week, Thursday I had a moment that I guess was realisation?
I was shopping with my friend, and as I wheeled myself passed a shop, I saw myself in the reflection. Seeing me in a wheelchair made my heart sink like a stone and my tummy flip. Its upset me more than I'd ever imagine it to do so but I think actually seeing myself in the chair made it more real, if that makes sense?
Maybe coupled with my friend being 20 years older yet here I was struggling to get in and out the car magnified it? She was a work colleague and I miss her and my job so bleeding much this week :( envy/jealousy/humility all in one go I guess.
You know that moment you wake up and everything is ok, everything is fine for that split second before your conscious thoughts take over? I guess that's the closest I can describe it to.
I applied for my blue badge today. Its getting ridiculous trying to find a parking bay I can park in that gives me enough room to get my chair out the back of my car, I cant get it in my boot easily enough so it goes in the rear seats meaning I need to open the door wide to get it out/in.
Now try picturing a carpark. how often do you find a space on its own? this often means I end up far away from where I need to be going and just makes things a lot harder from the word go.
If im going to sainsburys I find it really hard as I use their wheelchairs as it means I have more room in my car, but I have to walk from the space to the inside of the store, this means im in agony before Ive even got in the store :(
This morning I pointed out something to a garden centre I popped into. Its a typical store, two ways in and out, with automatic doors. All good so far, well when you go in the entrance there is a long walk around the displays before you get inside. Then you have to go around more displays before the tills and after the tills is the exit. Next to the exit are their wheelchairs to use..... I understand WHY they are there (people pay and get out the chairs before going thru the door) but they should keep an eye on it and move the used chairs back to the entrance. You cant go in the exit as it only opens from instore.
I mentioned this to a till assistant this morning and she promised to pass it on. Ive mentioned it to a staff member in B&Q a few weeks ago. Same problem. Chairs at the exit rather than the way in! Most helpful.
Anyways, thats enough typing for one day. Im going to hopefully add a few pics Ive either had sent or seen lately. I love them :)
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