Review of 2025

 Annual Review: 2025

Another year has passed, and it is time for my usual annual reflection on thoughts and activities throughout the year.

Symptoms

During 2025, the key symptom change for me is fatigue. I am noticing that I feel more fatigued more than I have previously. Some of that fatigue is mental fatigue and some of it is physical fatigue. My main intervention on the fatigue front is to drop the number of hours that I work each week. 2026 will see attention being paid to (a) if that makes a difference to fatigue, and (b) if I can survive adequately on the corresponding reduced salary.

I continue using baclofen, and I'm using my walking poles most of the time. I have opened doors into new service areas - occupational therapy (OT) and further bladder things. The result of these is that I'm going to book up various OT recommended appointments early in 2026, and will fully start intermittent self-catheterisation. 

In 2024 I received a second night split, and in 2023 I got a foam roller. During 2025 I realise that I'm not using these as much as I would like, so they also need to get on my 2026 agenda. In my review early 2023 I noted the idea to get a rowing machine. I got this after I moved house in mid-2024, but it hasn't seen much action - another item for 2026.

Essentially, I need to spend more time each day managing my HSP, and I don't really like that idea - I think that HSP already fills a fair proportion of my day, and to oblige myself to spend more doesn't feel right, even though each of those things should help my path delaying the inevitable move towards wheeled mobility aids. 

This Blog

During 2025 I haven't really ben paying attention to readership, and life has been very busy. Therefore, I've fallen out of the monthly posting. I post about most of my blog posts on Facebook, Instagram and X. I thank everyone who reads this blog, including people making comments appreciating what I say. Such feedback reinforces the reasons for writing the blog.  

Survey

No change from 2024 - I haven't had the time or energy to get a survey for 2025. 

Community Contribution

HSP Community activities for 2025 have not changed from recent years, including:

• Being Chair of HSP Support Group
• Representing the UK at EuroHSP
• Carrying on with the Enable disability network at work
• Involvement with the ED&I group at the Institute of Acoustics
• Conversations/interviews with people about my HSP 

The main element of my community contribution is once again from being chair of the HSP support group, despite decreased enthusiasm at times. The trustees and I work to help the group appropriately support its members. You can help too - please reach out to help us.

Knowledge

Similarly to the last couple of years, I don't feel like I've spent much time looking into new things. I am pleased there are research teams progressing with work. There are some interesting reports from recent projects, including those run by EuroHSP. I hope to be able to read more about these projects and report them here.

Bladder Update

I wrote recently about my bladder ultrasound scan, and the conversation about having significant urine retention. I recently had another appointment at the hospital. I was asked to keep a urine diary for 3 days, where I had to measure everything I drank and how much urine came out.

The how much out scores were that I go for a wee about 12 times a day, and that typically 200-300ml comes out each time. There's a bit of variation in how often and how much. I'm quite pleased that I dont often need to get up in the middle of the night to wee.

I returned to Southmead with a full bladder. They wanted to test my urine for infections. I 'delivered' a sample of just under 200ml which was tested. They then measured how much was left inside me, with a volume over 500ml - i.e. my full bladder was larger than it was at the previous appointment.

We discussed the retained urine, and if there is a large quantity of retained urine there is a risk of kidney infection. So, whilst the intermittent self-catheterisation reduces the risk of kidney infection, it comes with increased risk of urinary tract infection.

The advice for me is to start using intermittent self-catheterisation. I had a go at doing this in the clinic, which felt quite unusual! No particular surprise to see about 500ml of urine in the container at the end. That will be the emptiest my bladder has been for quite a few years. The advice is for me to do this twice a day, once in the morning, and once before bed.

Fatigue Update

Next up in the series of recent things going on, I've been finding that I feel more fatigued than previously. Its a blend of both physical and mental fatigue.

On the physical fatigue side, the updates that I've written about in recent days are all signs that my mobility is getting slower, and that more effort is required to move about. So, that fairly easily captures that side.

The mental side has several components. The obvious one is that with the knowledge I have about HSP, I can see myself in the future, where mobility is more difficult, and my reliance on the help of others is likely to increase. Whilst I've been working hard to influence the attitudes of people around me that disability is not negative, that influence only goes so far, and there is still a lot of general societal perspectives that disability is negative. Its not comfortable to see myself through that lens.

In parallel with this there are also lots of things going on outside of HSP world. In summary the three headline items are: There was a lot of effort needed to help my eldest through GCSE's, and more effort needed to help him with getting a good start at A-levels. There's a lot going on with my mum, and I feel guilty about being half-way across the country - my sister is carrying a lot of the load there. Lastly, my divorce continues to rumble along.

The last element of life is my work. This has been carrying as it has been in recent years, with some times more challenging than others. A conversation with a friend recently added a fourth reason to the list of why I work there; nice people, interesting projects, I have been treated well, and I am aligned with the approach to the quality of our work. 

The result of all of this is that It's not much fun getting to halfway through the evening and not feeling like I have any energy to do anything. It means that my social media scrolling has increased, and I'm sure thats not good for me. This post is all about getting to a change I'm making in the new year at work. 

Having been in my new house for about a year and a half, I'm finding that expenses are fairly consistent. So I'm choosing to drop the number of hours I work each week. I currently work 36 hours a week, which is 4.5 days a week. I originally dropped the half-day to allow me to do half the school runs, but it has subtly morphed into fatigue management. In January I'm dropping to 33 hours week, which gets me an hour back on three days out of 5. Yes, there's an equivalent drop in salary, but I'm hoping that those three hours help me get more energy in the evening so that I can do more things that I enjoy instead of not much. I will find out after a few months if that has made a difference and/or if I can cope with the lower salary.

Pilates and Muscle Update

My next update is an observation on how my muscle strength is changing over time. Readers may remember me describing this back in April https://hspjourney.blogspot.com/2025/04/symptoms-update-muscle-weakness-quads.html.

The latest update is to note that when I'm sitting down and wanting to raise my foot, I'll often grab my knee and use my arm to assist in moving my leg up. I'm also noting that its getting a bit more tricky to life my foot up when putting my socks on in the morning.

However, the place where I'm putting my body in the most unusual/distinctive postures is during Pilates. Over recent months I'm evolving my adaptions to help me make the movements. So, for seated movements I've been sitting on a block to allow my spine to be more upright. Here, I'm using another block in front of me or to the side of me so that I can more easily reach the ground. 

There are also extended positions where I can get my body into the position, but then find it difficult to move either those extended parts or other parts of my body. In this situation I have the choice either to hold the extended position, or to relax the extension and focus on the movement aspect.

Observing this about myself, and reminding myself that quads are important in walking, is beginning to let me see that it's not going to be too long until I'm going to need wheels to allow me to move about more freely. I'm not yet clear about what style wheels I'll go for first.

In the slightly longer term, my Pilates instructor also does seated Pilates classes, so I will be able to carry on with that even after the mat classes I attend become too difficult. 

Decreased muscle strength also means that my stair-climbing ability changes, and my falls risk increases, so those thoughts are beginning to move forwards in my mind. These thoughts now echo with my recent conversations with the occupational therapist. https://hspjourney.blogspot.com/2025/12/occupational-therapy-visit.html

I also need to consider muscle changes in my weight monitoring. Historically my muscles have been fairly stable, and my weight variation is entirely down to how much fat I carry around my midriff. If my muscles are beginning to shrink, that might be a weight change factor.

Occupational Therapy Visit

In the middle of November I had a visit from the occupational therapy team at my local authority. As noted in June, it was going to take a while as I am comparatively low on the priority list.

I had a good conversation with the (occupational therapist) OT. She said that she has worked with another person with HSP, so there are enough of us out there to be known!

Useful information:

• When I come to needing a mobility scooter, I can go to my local mobility centre. There are people there who can advise on the various factors which I will need to consider (weight, size, distance/range, terrain ability, load carrying, weather situations, and so on...). For me, this centre is in Fishponds: https://www.drivingmobility.org.uk/information-centres/view/bristol/
• If I wish to talk to a counsellor, I can refer myself to talking therapies. She particularly noted that they offer training in energy management, which I think will become more important as time goes on. My local link is here: https://vitahealthgroup.co.uk/nhs-talking-therapies/bristol-north-somerset-and-south-gloucestershire/
• My local authority have a house which has lots of accessibility adaptions made. I can book an appointment and go and work out which of these may be useful for me in the future. For me, this is in Yate, which is a few miles away:  https://life.southglos.gov.uk/kb5/southglos/directory/service.page?id=t4KaI-tTVRg

There was a good discussion about how things that the OT can provide are funded. They basically have two teams: Occupational therapists assess people, and the Housing team assess buildings. There are various funding streams available, depending on which team and the size/cost of the adaption needed. The items provided by the OT team are not means tested. Small items are provided easily. Larger items (>£1500) have a further process to go through. For housing items, there are two different relevant government Acts of parliament. Small adaptions are not means tested, and are provided through the Care Act. Larger adaptions are means tested, and are provided through the Housing Act. There is a Disabled Facilities Grant available, provided you intend to stay in your house for at least five years. Where costs are means tested, there is a cumulative limit. If you need multiple adaptions, the costs are aggregated together for the means testing.

For me we ended up talking about the absence of a downstairs toilet. There are two obvious routes - one would be to install a downstairs toilet, the other would be to add a stairlift to allow easier access to my upstairs toilet.

Her three main areas for me were: Falls risk, energy management, and future-proofing my house.

I think that my likely items are house adaptions in the small zone - adding a second banister, and getting some blocks to raise the level of my sofa's up a bit higher. There are a lot of other things which I am likely to need in the future, but not right now.

Bladder Ultrasound Scan Results

Back in the middle of July I began the next set of appointments following on from the trip to the National Hospital in January. I noted in a post in June that my appointment had been set up.

I went to the urodynamics part of my local large hospital (Southmead). They used an ultrasound to check my bladder, my prostate and my kidneys. The headline result is that my full bladder had about 550ml in it. I then went to the toilet and they measured again, with there being about 230ml left. This was described as "significant retention".

My kidneys are normal in size and appearance. My prostate is slightly enlarged.

This result then triggered a discussion with my GP, which covered the usual things:

• I have strong urge to go when my bladder is full
• It takes several trips to the toilet for my bladder to empty
• We talked about catheterisation (which I had previously talked about in 2017)
• Referral to functional urology at Southmead for further assessment and discussion.

So, whilst my trip to the National Hospital talked about a referral to a neuro-urology team, I appear to be getting the same information via a different route. 

New shoes, new ferrules and new poles!

I realise that it has been several months since my last update. Plenty has been going on, so there will be a quick flurry of posts as a record of relevant things.

My shoes reached the end of their life back in October, looking like this:

The immediate observation is that the wear on both shoes is similar, which suggests that using my walking poles has helped my mobility, allowing both legs to behave similarly.

The dataset of shoe use now looks like this:

Shoe Date	Months
Sep-14
Apr-17	31
Nov-18	19
May-20	18
Oct-21	17
Dec-22	14
Nov-23	11
Jun-24	7
Nov-24	5
Oct-25	11

This also means that I'm back, roughly, on a pair of shoes per year. Once again the new pair are Karrimor. Previous post: https://hspjourney.blogspot.com/2024/10/symptoms-update-new-shoes.html

Also, a week or two ago I finished getting through another set of ferrules for my poles, with a similar wear pattern to last time:

This means that the rate of wear of ferrules is about a new set every 4 months. Previous post: https://hspjourney.blogspot.com/2025/08/ferrule-change-again.html

In the last month my poles have also failed, which was to do with the twist lock failing. I managed to get a different set in the Black Friday sale, but my initial thought is that I dont like the shape of the handle as much, which adds another factor into choosing poles.

I'm not minded to track poles as a dataset, although it is interesting to note that I had just over a year of use from the first ones. The new ones are collapsible, but in a different way. The first ones twisted and smaller sections slid up within larger sections, whereas the new ones are all more like a tent pole. In reality I had the original poles for quite a few years, but they had sat in a cupboard for a long time before getting them into use in late 2024.