2022 Survey Open

I am pleased to announce that my 2022 survey is now open. 

This is my 10th survey. I am analysing changes in mobility aid use for anyone who has completed any of my previous surveys. If you have completed any of my previous surveys I ask that you please take some time to answer these questions.

The questions are available in English, Dutch, Italian, French, Spanish, German and Portuguese. These languages are the same as last year. Click on the relevant link in the table to below to access the questions in that language.

The focus for this years survey is: 

• Mobility
• Pain
• Disclosure
• Life with HSP
• Menstrual health

As previously my analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2022, with results published on Rare Disease Day 2023 - Tuesday 28th February. Also, as before only "name" and "country" are required questions. Answer all others that you want.

If you are using your phone to complete this survey I suggest you rotate your screen to landscape to make answering the questions easier. 

Language	Link to access survey:	Responses 30 Dec
English	https://forms.gle/u3PfSNHUZzGGvBpU6	263
Dutch	https://forms.gle/Ftn53UpFxbN7KWjp6	51
French	https://forms.gle/HKAovdAscgK7Njyd7	61
German	https://forms.gle/o4achYc6ya9QWMkq8	35
Italian	https://forms.gle/JFNGfAnk7UQMGB437	15
Portuguese	https://forms.gle/gy7PBbgBt3KkkVHK8	63
Spanish	https://forms.gle/FANkK3eQp77UdxQ76	42

2nd December update

A brief analysis of the English results (as this is the biggest dataset so far) shows the following points:

• Roughly 90% of people consider themselves to be disabled.
• Most people have or would disclose their HSP to others
• Between a quarter and half of people experience more pain, spasticity, fatigue or worse mental health during their menstrual cycle.
• About three quarters of people get pain from their HSP, with the most common descriptors being cramping pain, aching pain or tiring/exhausting pain. Pain is most intensely felt in the hips, legs, feet or back.

Symptoms update - antidepressants

Just a brief update for today.

In addition to my bladder medication I am now also taking antidepressants. Really this is a combination of things happening at the same time, rather than something specific to do with HSP. Therefore this post goes further outside my HSP experiences than they usually do. I'm grouping each of the factors together in headings:

HSP

In the background of my mind I know that my HSP is progressing. My spasticity gradually increases, and my walking and cycling speeds correspondingly gradually decrease. I know that the time that I will need to use mobility aids is approaching, and I've a journey of acceptance to go through before I get there. At that point my HSP becomes much more visible, and I suspect that societies view of me will change because I'll be using mobility aids.

Relationships

I've vaguely alluded to this in a few posts, but here it is explicitly - another factor is that my wife and I separated in 2020. That has been a bit of an impact recently, and we're now moving into the zone where its time to sort out houses. One of my uncertainties in this decision is how much account should I take of my future HSP in this decision - if I assume that I would be in my next house for 10 years, then I think I'd more than likely be using a wheelchair by that point (but not necessarily full-time).

Work

What with both of the above factors, and supporting my children, there are more things which I perceive to be important outside of work than at work. This has meant that I've been less able to put my full enthusiasm into delivering my responsibilities at work.

Coronavirus

Worth mentioning that there's been a worldwide coronavirus pandemic, an energy crisis and a whole load of other negative other stories in the news. Part of me is thankful that the pandemic lockdowns hit just after we separated as most people were busy looking after themselves rather than asking me what was going on. On the other hand, if there hadn't been a pandemic then perhaps we'd have sorted the house and other things out by now.

How long on antidepressants?

I'm thinking that I'll be taking these antidepressants until after the uncertainty around the house is resolved. I've asked myself if I've noticed any difference with taking these, and the answer is that I'm not sure. The main obvious difference is that since I have started taking them my resting heartrate has dropped significantly, which is a sign that they are doing something!