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.

Ferrule Change Again

 I now have the next data point for my ferrule sequence!

I changed to new ferrules at the end of July, meaning these ferrules lasted some 4 months (from late March). On the shoe front, my shoes are still wearing in the same style, but slower. I estimate I'm at about 8 months down on these shoes. There are many variables in play with shoes (as noted here: https://hspjourney.blogspot.com/2024/10/symptoms-update-new-shoes.html)

NHS 10 Year Plan

The UK Government published its 10 year health plan last week. This is particularly relevant for those with disabilities and health conditions. Around 25% of the population have a disability, and this accounts for 65% of the NHS spend. Therefore, changes to the NHS have the greatest potential to affect those with disabilities and long-term health conditions. The plan highlights three main changes it seeks to implement:

• Moving services from hospitals more into the community
• Moving from analogue/paper to digital services
• Moving from treating illness to preventing illness.

It sees costs moving out of hospitals and into neighbourhoods, and a greater number of GPs using digital approaches. It wants the funding to reflect the needs of the population. Key elements for people with disabilities and long-term health conditions are:

• Having agreed care plans for those with complex health conditions
• Having Personal Health Budgets with individual control over how that is spent
• Being able to use the NHS app to directly book appointments with specialists
• A plan for continuous care for those with chronic conditions
• Allowing people to get more for their conditions from their pharmacy
• A focus on wearable technologies to assist with continuous care
• The NHS app will allow access by people with caring responsibilities  
• More emphasis on genomics to improve knowledge and diagnosis
• Recognition that insurers ‘compete’ to avoid covering those with complex situations
• Protection of benefits for those with the highest needs

More generally, I also spot:

• Greater access to many things through the NHS app
• Greater transparency in decision making through data on waiting times etc.
• Staff using AI more to assist in their work

Read more here:

https://www.england.nhs.uk/long-term-plan/

https://assets.publishing.service.gov.uk/media/6866387fe6557c544c74db7a/fit-for-the-future-10-year-health-plan-for-england.pdf

My other interesting item of the week was The Bottom Line on Radio 4 talking about care homes. Several people who work in the care home sector were chatting, and one summed up very nicely that their main role is listening to the stories of the people that they care for - and this is not something which a robot could ever do. It will be interesting to see how this sector plays out in the NHS changes.

https://www.bbc.co.uk/sounds/play/m002f9fj

Symptoms Update - Blood test results

Back at my appointment at the National Hospital for Neurology and Neurosurgery earlier in the year, one of the GP actions was a blood test to check my prostate. This has been done as both HSP and the prostate can affect urination, so a check on the prostate can rule out things which could be masked by my HSP.

I had a PSA (prostate-specific antigen) test to measure the PSA protein in my blood. The result came back at 1.1ng/ml, which is well below thresholds for concern.

There was also a range of other blood tests which came back in the right ranges, which is good to know about. 

Next up on the appointments front is my bladder, and I have an appointment for that in the middle of July. The bladder items are the last ones from that appointment (noting that my O/T appointment may take some time).

 

Symptoms Update - Dynamic Stretches Work Well

I realise May went past without a post - oops!

At the beginning of June I was following up on some of the actions from my HSP clinic appointment earlier in the year. That had recommended a programme for strength and balance. A conversation with my GP routed towards me booking my own appointment with the neurophysiotherapy team, with the appointment being very recently.

The first part of the appointment was reviewing where I got to having switched from passive stretching to dynamic stretching. The summary is clear - there has been positive progression in several areas!

• I am now able to stand on one foot, which I was not able to do before
• My walking speed has increased
• My fall risk has decreased

I note that the stretch change is broadly simultaneous with starting to use my walking poles, so there may be elements of both coming into play.

The conclusion was that I should carry on with those stretches!

Looking at the strength and balance side, the general observation is that my quads are becoming weak, and we added an additional dynamic stretch to work on the quads.

On the balance side, being able to stand on one foot is an improvement from where I was before. I also have a challenge added to the routine, where I am standing on one foot and then also getting my mind to do other things - for example moving my arms about or throwing and catching an object. This additional activity causes my brain to have to work harder, making maintaining the balance more difficult. I tried standing on one foot with my eyes closed, but that is not possible. I may well investigate if I can manage standing on one foot with my eyes closed over time.

The addition of these two stretches now pushes my daily stretch routine more firmly in the 25-30 minute zone, whereas it had been more in the 20-25 minute zone.

I am also getting appointments booked up for the other items on the list from the clinic visit. I am on the list for an occupational therapist visit at home, but as my needs are low at the moment, I am lower on the priority list, and that may well take several months to happen.