Friday, 21 June 2013

AGM2013: Looking After Yourself (Liz Redmond)

Here is the first of four posts covering the presentations given at the UK HSP Support Group AGM on 15th June.

Liz Redmond is a neurogenetics nurse at the National Hospital and gave the first presentation of the day titled  Looking After Yourself. Her presentation discussed trying to maintain a positive mental wellbeing.

Changes in mood can end up in a vicious circle. A low mood can give rise to poor motivation. Poor motivation can give rise to low self esteem. Low self esteem can give rise to low mood. 80% of people with chronic disease suffer from low mood at some point. Symptoms of low mood can include fatigue (being tired, lack of energy etc.) and anhedonia (a lack of interest in something you would normally be interested in). Feeling low for a few days may be OK but Liz advised that if you're finding yourself low for a period of weeks then its time to seek help, your GP or a specialist.

To look after your mental health you need to be mentally active. Things which you can do include:

  • Make an effort to plan your time
  • Plan a treat into your day
  • Make time to spend with friends/family
  • Recognise situations that upset you (and have strategies to deal with these).
One technique which you can use is CBT (cognitive behavioural therapy) which helps with identifying actions/strategies for dealing with these situations which upset you. Essentially it seeks to identify what it is that upsets you, to then look at that issue from other alternatives, and then to prepare appropriate responses to help you regain control of the situation.

Liz mentioned some web-based CBT software

There are also other ways which you can raise your mood: 

Exercise - Exercise increases the levels of serotonin in the body. Undertaking exercise gives you time to monitor your thoughts, can help you relax and be part of a daily structure. For those with HSP stretching is a good exercise to try, and Liz suggested focussing on the muscles that you are using in stretches.

Positive Role Models - Thinking about someone who inspires you (whether famous or not) can give you an alternative viewpoint. You could consider what you can learn from them, how do you think they would behave in the situation, how could you do things differently to be more like them (etc.)

Social Life - Having a social life is very important. You should make time to spend with friends. People with low mood tend to reduce their social circle. If you end up like this for a while then your friends get used to you not being around and it is harder to get back to where you were. Liz advised to fight hard against this and make time. It is important to have friends around you. One step further would be to make new friends or try a new hobby.

Setting Goals - setting yourself a goal can be good, but they must be "Smart". I'll use weight loss as an example:
  • Specific - i.e. "I will lose weight" rather than "I will be more healthy"
  • Measurable - i.e. "I will lose 1 stone" rather than "I will lose some weight"
  • Attainable - this is about setting a realistic target (which in this example would depend how overweight you were to start with)
  • Relevant - make sure the goal you set is worthwhile
  • Time-bound - You to set a realistic timeframe over which you plan to do this.
You can read up on smart objectives elsewhere (e.g. If your target is to, for example, lose 5 stone in weight then it would probably be better to set yourself a separate goal for each stone of weight, and there is nothing wrong at all with reviewing and adjusting your goal as you progress. (non UK readers - 1 stone = 14lb = 6.35kg)

Complimentary medicine - massage, aromatherapy, acupuncture, pressure point therapy (etc.) can all make you feel better about yourself, and for those of us with HSP there may also be some muscle relief as well.

Liz's presentation concluded with an overview of fatigue - factors which can affect fatigue include: changes in sleep patterns, medication, mood, excercise. If you find that you suffer from fatigue then it becomes important to plan and to conserve energy - so plan to have a rest if you need to, prioritise your activities accordingly, organise your work/home so that it is easier to do things and check your posture.

Those with HSP could try looking at the expert patient programme: which provides tools and techniques to help people manage long term health conditions.

The one line which I took away as being most useful was Liz's comment when talking about social life that the first four minutes of any interaction are the most important. These first four minutes set the mood, so people should make an effort to be really positive and lift the mood. After four minutes the agendas of the other people will kick in and the mood has been set. If people find this hard then they should take a few moments before entering a situation to prepare themselves. This applies to home, work, social activities, meetings (etc.)

I also observed doing exercise and stretches whilst concentrating on the muscles which are being used is exactly what we do at Pilates. I've not had a chance to look at any of the CBT software or the expert patient programme yet. (and therein lies potential for some future posts!)

Low mood is effectively another word for depression, and I've previously blogged that many people with HSP have mild depression.  

Monday, 17 June 2013

UK HSP Support group 2013 AGM

Yesterday I went to the AGM of the UK HSP support group in Warwickshire. After the AGM there were 4 presentations by different specialists, and I'll write separate posts about those another day. This post is about the day and my observations.
I found the day very interesting and enjoyable. It was good to meet group members and chat about the various issues coming up from the presentations during lunch and coffee breaks. From an observational point of view whilst there was a great spread in the amount that the condition affects the people there (and a corresponding array of walking aids and wheelchairs) everyone seemed friendly, open and happy to talk.
The AGM itself was brief. One observation was that different members had been asking for meetings in their local area, and the comment was made that two people meeting in the pub would be a meeting, and that people shouldn't be afraid of attempting to organise a meeting themselves. The group would be able to provide support. This made me think that there is no reason why this couldn't happen anywhere in the world. Whilst part of the meeting is about the presentations another part is about networking (talking to people) and I think that the balance between these was about right.
In addition to the presentations Physio Function ( were there with a number of different FES systems which people could have a go with.
Conclusions: its meetings like this which demonstrate the real benefit of the support group. Attendees get first hand direct relevant information from professionals who work with HSP and the chance to meet and socialise with others who are in the same boat.