Assessment and the Spinnaker tower

Saturday just gone I had my PIP assessment. It was in Portsmouth, which is about an hour away and 43 miles according to good old google maps. 
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 :) 

Jump around

Last week I ordered some dog agility poles from here and they arrived yesterday, v quick delivery and fab quality. I have the pink set (why not!) and the red,blue and green set.
After the beagles gave it a thorough sniff and inspection, I got my son to help me set the poles up. 

I was worn out just opening the package! 

Bella did her usual unimpressed scowl at what I was doing, she always appears to look down her muzzle at you as if everything and everyone is beneath her! No idea where she gets that from ;)
Mooky just tried to eat it!

I stumbled round the garden setting up the 'course', sadly my garden isn't very big and is rather uneven with a rotary wash line smack bang in the middle, so I was waddling around bent over with fluorescent poles in my hands. I swear my neighbours must think I'm nuts!

Once ready I called the dogs out, Bella took one look, turned and went back to sleeping in the sun on the sofa (diva!) Moo gave it a go though :) #proud

Admittedly it was probably the pumpkin biscuit ( I will add the recipe for the biscuits in here at a later date as they are easy to make and a rather nice healthier alternative to shop bought treats. he was after as opposed to suddenly becoming a agility star. However, he flew over each jump and I was able to 'play' with him and interact and be a dog owner once more.
I was able to stand on the lawn and lead him over the jumps with a command (over) and the offer of a snack. After a few minutes both he and I were worn out so we came indoors and both crashed out on the sofa for a while. Success!!

I had two hospital appointments yesterday. At two separate hospitals! I'll update shortly as I'm v sleepy right now and dozing off whilst typing this on my phone as it is. 

Edited to add in the hospital appointments. 

I had two appointments yesterday. 

The first was at the hospital I dread going to due to past experiences there, infertility and the admission in December. It was in the eye clinic and im pleased to say my vision has improved slightly since the visit 6 weeks ago. I tried (and failed) to explain FND to her and we have drawn a conclusion that a flare up/episode of this I had over the recent months is what triggered my fast downhill decline in vision and the nystagmus worsening. We cant be 100% on this but between us we have agreed. So, if I have further episodes and I notice vision declining again just to monitor it as nothing they can do as I refuse the op to tighten the eye muscle, If it continues to get worse or doesnt seem to improve then ring them up and be re seen. So for now, I have been discharged by their team and im happy with that decision. 

2nd appointment was held at a different hospital some miles away, I had been here once before and its a military hospital and is one of the nicer hospitals Ive been in. 

This was to see the pain clinic team again. The nurse was WONDERFUL, I really can not praise her highly enough. She was everything you want and need from a medical professional. Honest, straightforward and kind. 

We discussed what has led to me being there and I brought up how I had previously seen dr B and had enquired into my back pain with him as originally I was seeing him for my knees. yet gp refused the re referral 3 times :( nurse is making a point of investigating that with the surgery!!

So I am being booked in for a through check over with a pain physio to see where my pain is, where my problems are and what makes it worse etc. Then i am seeing Dr B and discussing a pain management plan. She thinks it will likely be injection steroids or similar again. I dont care what they do i just want the pain relieving again. 

I am also taking part in a workshop on psychological pain and how to deal with it (or something to that affect) she has said its a tick box type thing just to get gp of my case and show we are trying all bases. I have said i want to try any way just because I will try anything and who knows it may help?

She wants them to take over the majority of my care plan and I am very happy with that, I feel I am in good hands with them and I know they are approachable and knowledgable. I hope I keep this view of them, as so far my experiences with medical staff has been some what of a dismay! 

That is in a nutshell, what happened yesterday. So today I am mentally and physically exhausted and having a lazy(er) day than normal. the weather is gorgeous which as an added bonus tires the dogs out so lovely snoring beagles to keep me company :) 

Right, meds and loo break time. I try and coincide having to get upstairs with as many things as possible, or kill as many birds with one stone? Im worn out just getting upstairs so i try and minimise it as best I can. 

Adios x 

Feeling let down.

I have tried a few times to write this post, but doing so on my phone is proving too timely so Ive waited until I'd logged into my laptop.

Last week I wrote a letter to my GP updating her on my appointment with the physio. I think I posted that in here? Well I got a reply a few days ago.
She has said she knew all along it was FNDs but didnt feel the need to tell me of this as it would have no relevance on my treatment. She has disagreed with upping my amitriptyline to the dose the neuro has suggested (80mg) and said I can increase to 30mg from 10mg. I started this sunday and in a fortnight i will up again to 30mg.
She has also agreed to send me to a pain clinic but feels I wont get any use from trying a variety of meds especially as the ones ive tried havent been working. She thinks I will get more from the psychological benefits of the pain clinic.....

All in all I feel let down. I feel I poured my heart out to her and I explained how scared I was and upset at losing my job and independance. All along she knew but wouldnt tell me what it was. I just dont know how I can go to her again now as my gp as I wont trust her word.

Reading things on the FND group it very rarely looks like people recover fully. if anything people decline. With and unsupportive dr that feels so isolating and scary.

I also had a letter (same day) with a date for my PIP assessment. 18th April. In portsmouth!!! Thats an hours drive away :( Which makes me think its a trap and if I go all that way I then automatically write myself off as being able to sit up for lengths of time :( Its such a daunting thought of being tested for my abilities, if I fail this i get left with no income at all and no way of getting a job as I currently am. The welfare system is currently a scary place to be, everything feels scary to me of late.

I should be out and about enjoying this gorgeous weather, care free and enjoying the time off my husband has just had for Easter, feeling like im his wife rather than a burden or a drain (both financially and emotionally)

Ive got another physio session today, im pretty sure it will be a quick check of how im doing the exercises and off on my way again within 10 mins like it always is......it never feels personal.

Mentally I am a lot stronger today/this week. I think spending time with husband last week really helped. Also having a car sitting there I could use when I needed is another boost. Ive not been off on my own yet bar picking up some meds the morning after I got her.
I am also more with it until I get tired and then I get the brain fog and forgetfulness. The other day I forgot I was baking biscuits and left them in the oven!!! I only realised when I smelt burning. I was totally oblivious to what I had just been doing and didnt recall making them :( Im also finding my cross stitch harder as I will do stitches and when I go back to it none of it matches the chart I am following and im more often that not undoing it rather than stitching! So maybe im not as mentally sharp as I thought LOL!!!

So there we go, its a glorious day out again and once again I am enjoying it from indoors. But I do go and sit in the garden with the dogs every now and again. Even if just for the change of scenery! Thats reminded me I am going to look at some agility equipment I can use in the garden for the dogs. If I can tire them out during the day for hubby it helps lessen the load on him. I can just sit out in the garden with them and call them over jumps. Be good training and bonding for us. This was me last summer. When I was much more able bodied :( Makes me sad to reflect back.

Remembering

Life. Quite a deep and poignant first start here!
But yeah life! Some times its wonderful. All colours and sparkles and glittery s***. Other times its cold, dark and cruel.
One person makes me feel of these things towards life when I think of her.
Today marks 5 years since a very good friend lost her enormous battle with cancer. 5 years since my phone beeped and those awful words were there in black and white. You'd gone.
She was the epitome of full colour/HD/ living life kinda girl. She was kind hearted and so gentle and wise. She was her sons universe. Not just his world. He has autism and she, quite literally was his everything. Then she was gone.

Refused a smear for over a year as she was under 25. Despite all the warning signs she was still refused as medical professionals deemed her too young to have cancer. As soon as she was 25 she had her smear. Within days she had the news she was stage 4.
She had just married her childhood sweetheart. Less than 11 months later she passed away.
She tried everything to fight it. But it had spread and took her.
Our little friendship bubble became duller that day. 03/04/2010
Always remembered Ally. Rest in peace sweetheart. Xxx