Moving forward

Being aware of what’s important to us and trying to continue to live our lives in line with what matters to us can help our general wellbeing and resilience.

Accepting can be difficult. Learning different ways of doing the things that are meaningful to us can help and give a sense of purpose.

Have a think about what matters to you and what you value the most in your life. Write these down in number order- 1 being the most important.

Transcript

What matters to you?- being aware of what matters to you is important to help live a meaningful life. It may be that you have to consider doing things differently to how you’ve done it previously, but by recognising its importance and thinking about how you could still do this can help with your general wellbeing and resilience.

Accepting where you are now and leaning to live with the symptoms that you are experiencing can be one of the biggest challenges. Being able to accept that life may be different, but still having value and purpose can lead to having a good quality of life. It can take time to process and get to this stage.

Activity- Have a think about what matters the most to you and what you value. Have a go at writing these down- 1 being the most important. Some example can be found on the next slide, but there may be others that matter to you personally.

Thinking about these values and completing this exercise may provide you with some clarity and help you think about where to focus the energy that you have.

• Family/friends/pets
• Marriage/couples/intimate relations
• Parenting
• Career/employment
• Education/personal growth/development
• Recreation/fun/leisure
• Spirituality
• Citizenship/community/environment
• Health/physical wellbeing

Transcript

Do you have enough energy to give all the boxes that matter enough energy?

Have you stopped doing things that matter to you because there is never enough energy left to address that box?

Are you struggling to prioritise – work, rest and play?

We hope by thinking about these value and completing this exercise you might have some ideas that may help you think about where to focus the energy you have to help your overall wellbeing. This may also help for later in the session where we explore goals.

Reduce pressures:

• Work
• Relationships
• Responsibilities

Managing symptoms:

• Physical symptoms
• Impact on mental wellbeing

Finding joy / gratitude

Healthy living:

• Diet and nutrition
• Exercise
• Sleep
• Parasympathetic activities-
• Relaxation, breathing work

Loss:

• Finance
• Status
• Friendships
• Pleasure
• Confidence

Fear of setbacks:

• Symptoms getting worse
• Oversleeping
• Deconditioning
• Weight gain

Stuck in the past or future

Transcript

Staying in balance can be one of the trickiest things to master as you may well be experiencing now- a feeling of doing too much, or too little and trying to find a happy medium.

We promote the methods on the left hand side of this slide as we know they are effective in helping regain control of symptoms, but we also know that working hard to put those things in practice can have other effects. For example, reducing pressure on yourself could lead to aspects of loss, such as finance, status, friends, pleasure or confidence.

Adopting activities such as breathing techniques or relaxation can take time to get the hang of, as can making the effort to eat well, and this might trigger different forms of fatigue.

Trying to find joy in what you’re doing might trigger thoughts of the past, of how things used to be, and that might then make you think about what the future holds, and for some people this can be difficult or even distressing.

Trying to maintain that balance between adopting the strategies we include on this course that are designed to help you manage your health, whilst avoiding some of the potentially difficult knock on effects is really challenging. The best advice we can give here is to be realistic about what you can achieve and manage, and not set yourself goals or standards that feel too much. Not all the strategies we suggest will be helpful or even practical to adopt in their entirety, we want you to think about what is do-able for you, to help you maintain that balance point as best you can without feeling like you’re either needing to make too much effort, or leaving yourself at too much risk of loss. This will take time to figure out, but it could be something to discuss further when we see you in clinic.

No supplement can replace all the benefits of a healthy balanced diet.

For the general population vitamin D is the only supplement recommended at 10ug (400iu) per day during October- March in the UK.

If you are unable to eat a balanced diet due to a heath condition then you may benefit from an A-Z multi vitamin and mineral supplement.  It is best to speak to a health professional for advice.

Avoid supplements that contain more than 100% of your daily recommended intake (check the label).

Some vitamins and minerals are harmful in excess quantities.  For more detail: https://www.nhs.uk/conditions/vitamins-and-minerals/

Transcript

Supplements may be beneficial for specific deficiencies or health needs but generally do not work for healthy people who eat a balanced diet.

Vitamin D is recommended for everyone in the autumn and winter months, and some people may need supplements like folic acid or vitamin B12 if their diet is insufficient. However, many supplements, especially in high doses, can be ineffective and even harmful, and interactions with medications are possible. A varied diet is the best source of nutrients, so it is important to consult a health professional before taking supplements.

Vegan diets may need supplementation with Vitamin B12 and iodine

The global supplement market was valued at nearly $152 billion in 2021, with projections to reach $300 billion by 2028.

Loosely regulated

Insufficient data or research to support their widespread use

Do your research before taking, speak with a pharmacist especially if you take medications as interactions can be harmful.

Internet products may not meet UK standards and may not have gone through the same checks as products from a more reliable source

“Natural” doesn’t always mean safe

For more information: https://www.bda.uk.com/resource/supplements.html

Transcript

Food or dietary supplements are concentrated sources of nutrients or other substances eg vitamins, minerals, amino acids, essential fatty acids, fibre, plant and herbal extracts, that have a nutritional or physiological effect.

Quality – Internet products may not meet UK standards and may not have gone through the same checks as products from a more reliable source. There could be less of the active ingredient than claimed, or the product could contain ingredients harmful to your health. If you want to buy supplements via the internet choose a recognised high street retailer that also trades online.

Supplements can be expensive and a lot of them have no proven benefits at all. They may claim to delay ageing, boost your metabolism or make you slimmer but in fact there is little or no evidence to back up many of these claims

The term ‘natural’ doesn’t always mean safe. Some natural botanical products can damage the liver. The safety of a supplement depends on a number of factors, including how it is prepared, how it works in the body and how much of it you consume

“Popular eating plan that promises health improvements without sufficient scientific evidence to support the claims”

How to spot a fad diet

Seems too good to be true, requires you to buy something expensive, promises fast results, recommend the same diet for everyone without accounting for specific needs, lack of longterm plan, imply that food can change body chemistry  and use of testimonials or celebrity endorsements in place of scientific evidence.

Dangers of fad diets

Nutrient deficiencies, muscle loss and unhealthy eating patterns plus less money!

For more information: https://www.bda.uk.com/resource/fad-diets.html

Transcript

Fad diets often involve cutting out entire food groups, promoting unusual food combinations, or specific foods, and they are frequently accompanied by the sale of expensive products and supplements. A fad diet is offering a short-term solution to a long-term problem.  Often they are unsustainable due to their restrictive or unbalanced nature.  If that initial goal is reached what next?

Remember, if it sounds too good to be true – it probably is!

Insert link or approved picture of eatwell guide

Transcript

This is the Eatwell guide which was discussed in detail in week 1.  This represents a balanced diet and shows all the food groups and the proportions in which they should be eaten to help meet our nutritional needs.

• Fluid
• Regular meals
• Reduce processed foods

• Reduces fatigue
• Improves muscle strength
• Manages pain
• Strengthens immune system
• Relieves gastrointestinal issues
• Reduces inflammation
• Improves mood

British Dietetic Association (BDA) food fact sheets are written by dietitians based on evidence and research.  They cover a range of topics and conditions.

https://www.bda.uk.com/food-health/food-facts.html

NHS Eat Well: Information and guidance about eating a healthy, balanced diet.

https://www.nhs.uk/live-well/eat-well/

Decisions regarding work and returning to education are very individual. Here are some things to consider when thinking about this area.

Returning to existing employment– Extended phased return, structure and routine, getting expert advice, workplace adjustments.

 Self employed – Citizens Advice/ Federation of Small Businesses.

 Returning to Education – Timetable adjustments, extended deadlines, Disability Advisor.

 Changing your role – Matching the job to your current capabilities.

 Unpaid work – Caring responsibilities, voluntary work.

Transcript

Everyone’s work/employment situation may be different, but we’re going to briefly look at some issues that often arise when people access our service and are living with health issues-

Returning to an existing employment-

Making your phased return as long as possible. You may need to start with very few hours and build up slowly. Ask for a referral to OH as needed or possible disability advisors within the educational setting if an option. If adjustments cannot be accommodated then you may need to remain off, if feasible. If you have to return to work due to financial issues and adjustments cannot be accommodated, it may be necessary to discuss a temporary reduction in hours or another role.

Currently in work, however work is challenging-

It may be that you’re in work, however work is challenging due to your health issues and symptoms. Again, you may benefit from input with your workplace occupational health dept. Having some workplace adjustments may be beneficial or again, looking at an alternative role if this is an option. We currently have a vocational rehab group running in the service, so this may be something you can access and speak to your clinician about if you feel this would be useful to you.

If you feel a change of role is necessary then think carefully about how this could look. You will need to be realistic about your physical and mental capabilities at the moment and look for jobs that match this. When the capabilities of the person are outweighed by the demands of the role the result is known as work instability, which can result in poor health and wellbeing. It may be that a change of role is a temporary move for now, and you can work towards something different if/when you feel able to.

Self employment – perhaps you are able to arrange your work differently to accommodate your symptoms. Formal advice is available from organisations such as Citizens Advice and the Federation of small businesses.

From an education perspective, it may be an option to have your timetable adjusted, for recommendations to be made regarding the education environment, for deadlines to be extended, and therefore having some support to explore these options may be beneficial.

We acknowledge that not all work is paid, and that some of you will be working as well as having caring responsibilities. Do not underestimate the demands of this when looking to return to work and seek advice if you need it. It is also important that you get support – Carers Leeds is an invaluable source of help with advice and practical help for people in a caring role. If you regularly do voluntary work talk to the organisation about how you could return, or whether there are other roles you could carry out while you are recovering.

Places to seek advice and support about getting back to work:

•  Line manager or supervisor
•  Occupational Health and/or Human Resources
•  Your union, if you are a member
•  Citizens Advice Leeds www.citizensadviceleeds.org
•  Welfare Rights Leeds City Council – 0113 376 0452 welfare.rights@leeds.gov.uk
•  Gov.uk website – search for the information you need
•  Acas (Advisory, Conciliation and Arbitration Service) employment advice service www.acas.org.uk
•  Federation of Small Businesses www.fsb.org.uk
•  Equality Advisory and Support Service (EASS) www.equalityadvisoryservice.com

Returning or being in work may not be possible for some. Claiming benefits can feel daunting and confusing – If you are struggling with this, please seek support. Having financial worries can impact your health both physically and mentally, so having support can help.

There are several organisations that can help including:

• Welfare Rights Unit
• Citizens Advice Bureau
• Money Buddies

DEBT- There are also organisations that can help support those worried about money or are in debt:

• Stepchange
• Money Buddies
• National Debtline

Setting goals allows you to make positive changes to your lifestyle and provides you with something to work towards.

Setting the right goals is an important first step- SMART. Short- and long-term goals.

Being able to achieve goals is a great motivator, allowing you to continue to make positive changes.

By using fatigue diaries and setting yourself small acheiveable goals, it will allow you to keep on track and reflect on your successes.

Transcript

Goals were also explored in session 3- mental wellbeing, however were just going to recap as this will allow you all to begin setting goals or thinking about what you would like to focus on as part of your rehabilitation with your clinician. This can then be explored in your upcoming appointment with them.

Goals give you a sense of structure, purpose and positive reinforcement

Goals can help you feel more motivated despite the limitations that you are experiencing.

Goals can be as small as you want them to be, the smaller the better! You can set goals for the next hour, afternoon, day, week or month. Break each goal down into the smallest micro steps.

A sense of achievement can be gained by completing the smallest goals

This helps build up confidence and creates momentum

Goals can be described in many ways.

Having an Aim,: A Plan: A Target: A Focus:

For people living with health condition’s goal setting is important

You may recognise this slide from earlier in the programme- Examples.

Activity (If time)- allow time to set at least one goal.

• Activity diaries
• Health trackers – fitbit/watches/apps
• Increase in activities of daily living
• Gratitude journals
• How does my body feel?
• Family/friends/colleagues
• Borg scale – effort rating 1-10
• Review of goals

Transcript

As a service we request people carry out questionnaires (outcome measures) as these allow us to obtain a baseline when you enter the service and provide us with some scores to compare against if completed again, after having some therapy input.

Some people will use tech such as smart watches or apps, e.g. daily step counts, exercise minutes, stand counts etc.

Others might like to keep diaries or mark dates on the calendar when they’ve worked on something particularly important to them – this could be an activity, or it could be when you actively gave yourself time to rest, or practised breathing techniques.

One of the most effective ways to monitor progress is to get in touch with how your body feels and reacts to things, which is known as interoceptive awareness. With this, you’re using your sensing brain to detect change rather than your thinking brain, so rather than ‘what’ am I doing, it’s ‘how’ am I doing, what sensations do I notice when I do this activity?

Examples could include noticing that you’re able to relax your body quicker to get to sleep, or that you don’t get breathless quite as often. It could be something like feeling less irritable in noisy or busy places, or just that you can make out words on a page more easily.

The Borg effort scale is a really simple way of monitoring how you feel during activity as you score your effort levels from 1 and 10, with 1 being very little effort and 10 being maximal effort. In the early sages this can help you make sure you don’t push too far and drain your battery of energy, but as you improve it can be a way of pushing yourself a bit more and increasing your effort level.

Friends and family are a great resource when it comes to measuring your progress as they will notice things that you don’t. Sometimes people around you will notice changes and automatically think you can see them too, but when you live with a health condition every day I think it’s harder to see the changes. So talk to those around you and ask what they’ve noticed. Ask them to tell you when they notice you doing things differently as this can be really encouraging and meaningful. Likewise, you might find yourself making plans to do things you haven’t felt able to do because of your symptoms – it might even be things you thought you’d never do again, and this can be a really good motivator.

• What is most helpful to me?
• What can I do if things become difficult?
• What can I do to help myself?
• Has there been a trigger?
• Who can I seek support from?
• Have I given myself time?
• What have I learnt, and how can I use this to support my health?

Transcript

So, just as we want to be able to measure success, we also know that some symptoms can fluctuate (good and bad days), and there may be setbacks too- this is where that balance between your symptoms and managing your day-to-day activities is lost. Setbacks are normal and managing your health condition doesn’t usually happen in a straight line, there may well be twists and turns.

Knowing that you are likely to have setbacks at times and planning how you will deal with them often makes them less scary when they happen. Accepting that you might need to pace or plan yourself differently for a while should help you cope should things start to worsen.

So the first place to start is knowing what’s most helpful to you, and how you use these techniques to help you maintain progress. This could be breathing exercises, going to bed earlier, talking to someone about how you feel, or a combination of things. So knowing how will you use these things in your ‘tool box’ should your symptoms start in increase is worth giving some thought.

You might need to reduce the distance you walk, or slow down on stairs if you find yourself becoming breathless again. You might go back to doing an online food shop rather than going to the supermarket to help you conserve energy if you fatigue. Or you might even re-visit these presentations to refresh yourself on some of the techniques and information, just to help you feel more confident in managing your symptoms.

One area where it can be really difficult to adjust your activity levels is where others may rely on you – this could be in terms of work, or children, family members, or all of these. Where you can, be honest with those around you as soon as possible, explaining that you might be having a flare up and that you might need to re-think what you’re doing. If you’re at work and you have annual leave you can use, or time owing, think about utilising this to shorten your hours, or see if there’s a way of you working from home. If you can’t make changes in the workplace then probably the best you can do is to make adjustments at home, so you’re prioritising where you can and leaving things that are less important. This isn’t an easy process, especially if you’ve been managing your health well, but it’s important that you do it where possible.

Seeking support can make setbacks much more manageable so if you feel able to do this we would advise you to. If you would go to friends or family, maybe think about talking to them about the fact you might call on them should you have a setback. I can imagine some people will feel so much better knowing there might be something they can do to help you.

Know that you can see your GP for advice, and don’t be afraid to go and get your symptoms checked if you’re not sure. Some patients may find that due to their health conditions, they may pick up more infections, so it’s important to see your GP if you notice new symptoms or are feeling particularly unwell. Also know that you can access our service again should you need it in the future.

Activity- Dealing with ‘setbacks’ questions in workbook.