The path to benefits

I was having a conversation the other day about potentially needing benefits in the future. I had a quick look into the UK Personal Independence Payment (PIP) benefits. There are two elements to this benefit, and I have looked at each element, and thought about how my HSP progression will change in the context of scoring points for this benefit.

Right now I score zero points, so I am quite a way off these benefits. I have looked at this wearing three different perspectives

• a 'near future' perspective (by which I mean the next 5-10 years), 
• a 'far future - positive' perspective where I assume that I'm going to be able to manage my HSP pretty independently, and 
• a 'far future - negative' perspective where I assume that I'm going to need assistance of one kind or another to do things. 

People are eligible for standard rate benefits when they get to 8 points, and there is an enhanced/ increased rate when people get to 12 points.

For the daily activity aspect:

Activity	Comments	Near future
Washing & Bathing	Aids for showering - feet	2
Toilet needs	Self catheter in future	2
Dressing/undressing	Aids for socks/shoes	2
Verbal communication	Hearing aid expected	0
Preparing food	Possible aid/appliance in future	0
Managing therapy	Possible aid use in future	0
Taking nutrition	Aids not expected	0
Reading & understanding	Cognitive effects not expected	0
Engaging with others	Cognitive effects not expected	0
Budget decisions	Cognitive effects not expected	0
Total		6

This shows that I do not expect to be eligible for this benefit in the near future. Should I need a hearing aid or adaptions in the kitchen to prepare meals, then that would make me eligible for this benefit.

For the mobility element:

Activity	Comments	Near future
Moving around	Distance > 200m	0
Planning/following	Cognitive effects not expected	0

I dont expect this to trigger in the near future as I will be able to use mobility aids to move more than 200m.

When looking at the far future, with a positive perspective I think:

Activity	Comments	Far future - positive
Washing & Bathing	Wet room	3
Toilet needs	Supervision	2
Dressing/undressing	Assistance lower body	2
Verbal communication	Hearing aid	2
Preparing food	Kitchen adaptions	2
Managing therapy	Physio etc.	1
Taking nutrition	Aids not expected	0
Reading & understanding	Cognitive effects not expected	0
Engaging with others	Cognitive effects not expected	0
Budget decisions	Cognitive effects not expected	0
Total		12

Activity	Comments	Far future - positive
Moving around	Move more than 50m	4
Planning/following	Cognitive effects not expected	0

In this perspective, I easily meet the standard rate benefit for daily living, and am on the threshold for the enhanced rate. There are still low points in the mobility element as wheelchairs/mobility scooters are not counted. I assume that I am still able to walk between 50 and 200m using sticks and/or a walking frame.

When looking at the far future, with a negative perspective I think:

Activity	Comments	Far future - negative
Washing & Bathing	Assistance	4
Toilet needs	Assistance both bladder & bowel	8
Dressing/undressing	Assistance upper body	4
Verbal communication	Hearing aid	2
Preparing food	Kitchen adaptions	2
Managing therapy	Physio etc.	1
Taking nutrition	Aids not expected	0
Reading & understanding	Cognitive effects not expected	0
Engaging with others	Cognitive effects not expected	0
Budget decisions	Cognitive effects not expected	0
Total		21

Activity	Comments	Far future - negative
Moving around	Unable to stand	12
Planning/following	Cognitive effects not expected	0

This shows that I would easily be entitled to the enhanced rate for daily activities, and an inability to stand would make me eligible for the enhanced rate for mobility.

Conclusion - quite some time to go before I think about this benefit - and I'm hoping that changes happen slowly.

Readers should note that I've not really done any research into what counts and doesnt count (aside from noting that wheelchairs dont count as a mobility aid) so this is very much an instinctive view rather than a researched view.

 

Symptoms Update - Fatigue

Its worth me making a note of this. I've once again been finding myself quite tired, and I've noticed that my mobility feels more difficult. I assume that my increased stiffness is a result of me feeling tired.

I was chatting with someone the other day trying to describe more detail around the fatigue symptom. This was quite useful as I'd not really put into words what had been going on. In my view fatigue from HSP has two elements, there is both a physical fatigue and a mental fatigue.

Firstly, the physical fatigue. In the most simple terms, you have to put more effort in to moving muscles, and supplying that extra effort comes at a cost. Each muscle movement - particularly in the legs - needs to do the usual work moving as it would for someone without HSP, but you also have to overcome the spasticity as well. In the muscle pair the muscle being asked to relax doesn't get that instruction fully, so the contracting muscle also has to overcome the residual tightness in the muscle.

Secondly, the mental fatigue. Whilst you're not specifically asking the muscles to do different things they are doing that. That extra work adds to your brain power as you have to amplify the instructions to make sure they get through. Your body is also having to compensate for any additional delays in processing, delays in movements, and changes in balance. Add on top of that any additional adjustments so that you dont scrape your feet on the floor (etc.) means that more brain power is needed to walk about.

On top of the additional brain power in moving around, some people will also be affected by burdens of being 'different' - worrying about what other people think whilst they are moving, uncertain about how HSP is going to change in the future, and how HSP might affect relationships with other people. I've chosen three examples here, and I know that different people can have different worries. For many these feelings dont go away, and that adds to the mental fatigue of HSP.

This helps explain why many people with HSP find it hard to walk and do anything else at the same time. There is much more brain power needed, meaning to stay safe (or at least not wobble around so much) effort has to be put in moving above talking etc. which people want to do when they are out and about with others.

It also makes me realise that the decisions to use/change mobility aids are not just going to be about the physical mobility side of things, there will be a big range of mental considerations as well.

I'm obviously trying to make sure that I'm trying to improve my sleep and feel less tired, but thats quite a challenge right now!