Thursday, 31 March 2016
Yesterday, we had some training at work and the trainer was someone who I had never met before. I always aim to sit somewhere near the front so that when I need to escape to the toilet, I can get out of the room without disturbing anyone else. I did this yesterday in the training but the trainer positioned herself right next to me for most of the session. At first, this didn't bother me but then, as we went on, she started leaning on my wheelchair. The first time she did it, I wasn't expecting it and my arms did that drop-reflex thing that babies do when you pretend to drop them.
I can't describe the feeling of being leaned on without warning. It feels like I've suddenly lost my balance and that makes me feel rather nauseous. It also means that every movement the person makes, gets transferred through my body.
I've found that people lean less now that I don't generally have handles on my chair. It's more difficult to find a solid spot to lean on. When someone does though, they are really in close contact with me and it feels very invasive.
I have two workplaces and one of them is on two floors and has a lift. Both buildings are fully accessible, for which I am very grateful! Yesterday though, somebody looked slightly surprised at my method of using the lift and I thought I'd share my lift tips.
Big lifts are easy - you can go in forwards, turn around and go out forwards. Small lifts can be a bit more tricky because there isn't space to turn around. I find it difficult coming out backwards because you can't negotiate obstacles, including people who are waiting. So I always reverse in so that I can come out forwards and just roll away.
I ring for the lift and while I'm waiting, I turn around and position myself so I can go straight backwards. When the lift arrives, I keep an eye over my shoulder in case there is somebody in the lift that I need to move for. If there is, it's much easier to move because I'm going forwards. When the doors open, and assuming it's clear, I reverse carefully back, being extra careful not to crack my knuckles on the sides of the door. When I get in, I put my brakes on and press the button. When I arrive at my floor, I just head straight forwards and off...
Monday, 28 March 2016
Sunday, 27 March 2016
- Access to work - you can get this without PIP but PIP makes everything much simpler and quicker. I used this scheme many years ago when I had problems with my eye sight (now fixed). They paid for taxis to get me to work, magnification equipment and a few other things. This enabled me to keep working when I would have otherwise had to give up. In my current job, I didn't apply, but I wish I had now. With this disability, they could have provided some ergonomic stuff that would have made me more comfortable. However, my employer has been great and there have been no real problems connected with my health.
- Motability - I don't get this because I'm only on the standard rate of the mobility component of PIP. If you get the higher rate, you can exchange the money for a mobility scooter or car.
- Road Tax - If you get the standard rate of mobility, like me, you get 50% off your car tax. If you get the higher rate, you're exempt from car tax.
- Blue Badge - I have a blue badge. I had to go through an assessment to get it and I remember it being very stressful, not knowing whether I'd be eligible. At the time I had just got a job but there was no public parking anywhere near. A blue badge meant I could park right outside in a timed parking bay, without limit. Now, I can't imagine life without my blue badge and with PIP mobility, I don't have to be reassessed for my blue badge, it's automatic.
- Council Tax reduction - We haven't applied for this yet. You have to have made certain adaptations to your house to qualify. We're nearly there. Once the stairlift goes in, in a few weeks, we can apply to pay the band below what we currently pay.
- Disabled Person Railcard - I haven't got one because I don't use the trains but it's good to know that if I ever can't drive, I can get help with lower rail fares.
- Carers Allowance - For us, this is another 'not yet'. At the moment, Neil cares for me all the time we are at home but we're kind of getting by with it, so we haven't applied for help. In the future though, it's good to know that we can apply if we need it.
Saturday, 26 March 2016
- Planning and following journeys
- Moving around
|PIP - moving around question|
Friday, 25 March 2016
Sometimes, to recover doesn't necessarily mean complete rest (though sometimes it does). Today, I just had a lie in - for me that means waking between half past seven and eight o' clock - and then got ready very slowly. It's a sunny day and has been dry for a good few days, so it was a good day to give my wheelchair a wash. I took a soft topped stool outside and a bucket of soapy water and it actually felt quite relaxing to sit there cleaning up my paintwork.
As it is such a nice day and the rest of the weekend is set to be rather unpredictable weather, I thought I should make the most of it and go for a walk in the park. I did manage a little walk, holding onto the back of my chair for support but my legs and back feel quite weak today so I had a ride and propelled a lot. I did two circuits of the park though and enjoyed the fresh air. I took some photos too...
I think our park is looking very beautiful today! It certainly lifts the spirit to get out and enjoy it, though for me, I wouldn't want it much warmer. I think it helped physically as well. The rest of the day will tell.
Thursday, 24 March 2016
There are now several questions where I don't score any points, for which I am grateful! Whilst I want to get points for areas where I genuinely struggle, it is far better for me to have some things that don't cause me any problems at all.
The dressing and undressing one seemed to surprise my assessor. She asked me how I manage, so I showed her how I use my clothing to lift my leg to put socks and shoes on, etc. She probably knew where I was up to on points and wanted to find me another 2. I would have preferred to get two more though for toileting or for preparing food.
So, here endeth day-to-day living. I score 10 points altogether. Eight points qualifies me for standard rate of PIP. Twelve would have given me the higher rate. For me, I'm grateful that I get something and that it isn't means tested because getting PIP will enable us to adapt the house, buy further aids and get help in that will enable us both to continue working for longer. Long term, this benefit keeps us me in work and off benefits, so it makes sense to give me it.
Tuesday, 22 March 2016
For me, this is my biggest issue in terms of day-to-day living. The nerves at the base of my spinal cord were crushed and there is now permanent damage. It's easy to see that I don't walk well but nobody sees what for me is the worst part. I am incontinent. I can't feel when I pee and I get unreliable messages telling me when and how urgently I need to pee. So I wear incontinence pads all the time. On top of that, I can't empty my bladder fully because the nerves don't communicate with the muscles properly, so I self-catheterise to make sure my bladder gets emptied regularly.
As well as the bladder issues, there is the fact that without help, I can't get on and off a normal toilet. Sitting down is easier - I can just drop. Getting up is sometimes impossible, unless I can find something to pull myself up on. I have to confess to having broken various toilet roll holders and door handles in restaurants and pubs that don't have an accessible loo.
So here's the PIP question:
|Question 5 - PIP form|
|My wardrobe - more full of catheters and Tena than clothes|
|A variety of catheters + hand sanitiser|
|Raised toilet and frame|
a. Can manage toilet needs or incontinence unaided. 0 points.
b. Needs to use an aid or appliance to be able to manage toilet needs or incontinence. 2 points.
c. Needs supervision or prompting to be able to manage toilet needs. 2 points.
d. Needs assistance to be able to manage toilet needs. 4 points.
e. Needs assistance to be able to manage incontinence of either bladder or bowel. 6 points.
f. Needs assistance to be able to manage incontinence of both bladder and bowel. 8 points.
Monday, 21 March 2016
The next question is about washing and bathing. This is a difficult one because it's not just when you're at home that this is an issue. We've adapted our bathroom so that home is manageable. Going away is really scary though.
I can't bath at all. I can't sit on any kind of hard surface. It hurts way too much, both at the time and afterwards. Showering is okay but I have to be quite quick as I can't stand for very long. Also, I need a selection of things to hold onto or I slip. I can't bend to pick things up, so I need shelving at standing height.
|Question 4 - PIP form|
|Rain shower and removable head + grab rails|
|Walk-in shower - low level|
Washing and bathing.
a. Can wash and bathe unaided. 0 points.
b. Needs to use an aid or appliance to be able to wash or bathe. 2 points.
c. Needs supervision or prompting to be able to wash or bathe. 2 points.
d. Needs assistance to be able to wash either their hair or body below the waist. 2 points.
e. Needs assistance to be able to get in or out of a bath or shower. 3 points.
f. Needs assistance to be able to wash their body between the shoulders and waist. 4 points.
g. Cannot wash and bathe at all and needs another person to wash their entire body. 8 points.
Even though this was a major piece of work for us, it only counts as an aid or appliance. Therefore I get 2 points in this category. Even if they had allowed for the worst case scenario, which is when we are away and don't have good facilities (even in advertised accessible rooms), needing help to get in and out would only be worth 3 points.
Sunday, 20 March 2016
The second section in the day-to-day living part is about eating.
|Eating question - PIP form|
a. Can take nutrition unaided. 0 points.
b. Needs –
(i) to use an aid or appliance to be able to take nutrition; or
(ii) supervision to be able to take nutrition; or
(iii) assistance to be able to cut up food. 2 points.
c. Needs a therapeutic source to be able to take nutrition. 2 points.
d. Needs prompting to be able to take nutrition. 4 points.
e. Needs assistance to be able to manage a therapeutic source to take nutrition. 6 points.
f. Cannot convey food and drink to their mouth and needs another person to do so. 10 points.
The third section is about managing treatments. This is where I scored the highest points. It's about medication and physiotherapy.
|Treatments question - PIP form|
I take medication, though nowhere near as many as some people but I do a lot of physio. In the morning, when I am quite alert and have some energy, I manage my physio okay. In the evening though, I usually need reminding to do both and I often can't remember whether I've taken medication or not. I'm so physically and mentally exhausted by evening that I often just fall asleep if left to sit on the sofa for more than 5 minutes.
Managing therapy or monitoring a health condition.
a. Either –
(i) does not receive medication or therapy or need to monitor a health condition; or
(ii) can manage medication or therapy or monitor a health condition unaided. 0 points.
b. Needs either –
(i) to use an aid or appliance to be able to manage medication; or
(ii) supervision, prompting or assistance to be able to manage medication or monitor
a health condition. 1 point.
c. Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week. 2 points.
d. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week. 4 points.
e. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week. 6 points.
f. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week. 8 points.
I get 4 points because Neil has to help me with physio and my physio takes between 3.5 and 7 hours per week. I think they have assessed this section correctly. In terms of incurring extra costs for living as a disabled person, it worked backwards for me. I used to be a teacher and absolutely loved it. When I returned to teaching, post-injury though, I just couldn't manage the demanding hours alongside my physio. It was too much! So although I enjoy my new job, I have lost a huge amount of my salary because I've had to stop teaching.
My left leg is particularly weak and alternates between vitually no sensation and painful sensations that don't even exist. I often start screaming in the evening, that I've got a pin in my leg/foot or that something is crawling on my leg. Then there's the cramps - don't get me started on that! It's like my leg goes into labour!
Physio does help with all these symptoms and it keeps me mobile so that I can work during the day. It is painful though, doing some exercises and stretches, so I tend to put it off. Fortunately, Neil seems to get his evening entertainment out of nagging me and eventually I do it - even if only to shut him up.
Saturday, 19 March 2016
Many people have asked me about PIP, so I thought I'd share a little bit each day about the different parts of the PIP assessment and how they affect me. It is quite a lengthy form and process but I'll break it down.
Firstly, PIP comes in two parts:
- Day-to-day activities
|Preparing food question - PIP form|
|Neil chops veg for me in case I run out of meals|
|Freezer full of pre-cooked meals|
This is just the first of many sections of the PIP application. I'll share more next time.
Saturday, 12 March 2016
This weekend, I'm at a training event at a lovely hotel near Derby. It's run by Care for the Family. Just by way of background, Care for the Family was set up by a lovely Welshman called Rob Parsons. He used to be a lawyer and became increasingly saddened by the number of couples getting divorced. He felt that God was calling him to do something, so he started a charity that focused on strengthening family relationships. The idea was to preempt and prevent problems, rather than pick up the pieces.
Now, Care has many sections. I'm involved with befriending parents who have children with additional needs. This annual training event gets all of the befrienders together.
It's lovely to talk to other mums about autism--related stuff but it's also amazing to hear stories of real challenge and yet these parents still have something to give to other families who are finding it tough.
Highlights for me have been saying grace in sign language and sharing photos of our children and chatting about them. I haven't taken any photos as I don't want to invade people's privacy but I'll try and get some pics tomorrow of the accessibility and otherwise of the hotel.
Saturday, 5 March 2016
It's probably obvious but here's my tip for occasions such as these: dress warmer than you think you need to. It was about 3oC and if you are sitting still, like in a wheelchair, you soon get cold. I'm wearing a Thinsulate-lined hat and gloves and my trusty ski jacket. Even though I walked some of the way and self-propelled a lot, I was glad of the warm clothes.