You may be wondering what the term ‘spoon theory’ means, and in this blog we’ll explain what it is and how it is useful for people living with a long-term health condition, such as multiple sclerosis (MS) and those around them.
Chronic conditions can come with symptoms that include fatigue, and with MS there are two types of fatigue. Primary fatigue is caused by the demyelination that occurs in the central nervous system, slowing down the messages from the brain. Secondary fatigue can be a result of the other symptoms one may experience from MS. For example, disturbed sleep can be from bladder issues, pain or spasms, or fatigue may be a side effect of medications taken to aid MS symptoms.
Fatigue is more than the tired feeling that most people experience. Day to day tasks can be difficult to complete and is the feeling of exhaustion for extended periods of time. Lifestyle adaptations can be helpful, such as a change in diet, pre-emptive measures ahead of a particularly busy day or vitamin supplementation.
So, what is Spoon Theory? This term was reportedly introduced by Christine Miserando, who lives with lupus, and it was developed to help illustrate to the people in her life how fatigue feels for someone living with a chronic condition. The idea is that people without a chronic health condition start the day with an unlimited number of spoons, whereas someone with a health condition starts the day with a certain number of spoons.
Different activities throughout the day use up the spoons, and once the number of spoons for that day have been used, the only way to replenish them is by resting and getting good sleep. Getting ready for the day may use up as many spoons for as many tasks, for example, showering is one spoon, getting dressed is another. Or, if you wake up from a bad night’s sleep, you might begin with less spoons for the day than you might usually have.
Spoon theory helps the person living with MS understand their own pace and the tasks that they can realistically do in one day, whilst recognising that adjustments might need to be made. It also helps family and friends understand what it’s like to manage fatigue and how it impacts your daily life.
To learn more about MS and fatigue, download our latest Fatigue Choices booklet. From supplementation to tips on daily adjustments that you can make, our Helpline team has put this together for you to access it whenever you need to. Don’t forget, you can contact our helpline team free on 0800 783 0518 or via email at email@example.com.
Did you know that disabled people face extra costs of around £583 a month? On average, a disabled person’s extra costs are equivalent to almost half of their income and according to research carried out by the charity Scope, money spent by disabled people does not tend to go as far. So, maximising income and using all entitlements can help make sure your finances are looked after as much as is possible.
Our welfare benefits system is an important part of giving disabled people some financial security and a degree of financial wellbeing. Claiming the right benefits with the right premiums can allow people to exercise choice and control over their support and the way they live their lives.
In this blog, we look at a variety of ways to either make sure you are receiving what you are entitled to or ways to save money by accessing specific schemes available to you.
Navigating the benefits system can be a complex and often lengthy task. Knowing how to find out what you may be entitled to can be difficult. That is where the handy online benefit calculators can help. They are only available to those living in the UK.
There are three main independent benefit calculators that can help you, to find out what you may be entitled to, and how to claim for them. They are free to use and are anonymous. They vary slightly in the information they can give you. For example, Turn2us does not give information on contribution-based benefits whereas the others do.
entitledto gives information on income-related benefits, tax credits, contribution-based benefits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work.
Turn2us gives information on income-related benefits, tax credits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours.
Policy in Practice gives the same information as entitled to, but also tells you how the benefits are calculated and how they will be affected if you start work or change your working hours.
To complete the calculators, you will need to provide information on any savings you may have, household income, existing benefits and pensions (including anyone living with you), your outgoing bills (such as rent/mortgage/childcare payments), a council tax bill.
Circumstances can mean that sometimes extra funds are required to help with things such as adaptations, mobility aids, new technology and equipment, to name but a few. There are grant funds available that may be able to help. Grants are not normally repayable and occasionally you may need to work with an intermediary organisation such as Citizens Advice or your local disability support charity.
Turn2us has a helpful search tool that can find potential grant funds. Using the filters on their search function you can search by occupational grant-giving bodies, disability charities and organisations that are local to you.
MS Research and Relief Fund offer financial assistance specifically to those affected by MS.
Disability grants is a website that provides a guide to grants for the disabled. You can narrow down your search to be more specific, such as a grant for disability equipment, including wheelchairs, adapted vehicles, trikes and bikes, computer and assistive technology grants.
Finding insurance that provides you with the right type of cover, whilst being affordable, can prove to be complex. This is especially so for those affected by a registered disability such as multiple sclerosis (MS) and applies to all types of cover. For example, with home insurance, you may have specific expensive items that you need to be covered for accidental damage, such as stairlifts, and your medical condition may lead to an increase in your travel insurance premiums.
It is important to be aware of issues that you may need to consider, whether that be when you are looking for a brand-new policy or how to deal with any changes in your medical circumstances that could affect your current cover.
MoneyHelper formerly known as the Money Advice Service is powered by HM Government and provides a detail-rich guide to obtaining insurance if you are disabled or ill. This guide looks at your legal rights, highlights things to consider when buying insurance and how to challenge decisions that you feel may be discriminatory.
Insurance and MS is an informative guide provided by the MS Society which looks specifically at issues that people affected by MS should consider, from types of policy and cover they provide to what you should tell insurance companies when disclosing your condition.
If you live in Scotland, Wales or Northern Ireland your prescriptions will be free, but if you live in England the cost is £9.35 per item. Some people qualify for free prescriptions if they are eligible for a medical exemption certificate. One part of the eligibility criteria that may well apply to some people living with MS is that if you have ‘a physical disability which means you cannot go out without the help of another person’ then you should be eligible for an exemption certificate.
Most of us have heard about the ‘pink pound’, but do you know about the ‘purple pound’? This is the spending power attributed to disabled households in the UK and amounts to £249 billion a year. Research has shown that disabled people are overspending in many areas compared to non-disabled people. We know that people may need a little extra help when making sure they have as much choice as is possible in how and where to spend their purple pound.
If you want to be able to make sure your disability-related expenditure is money well spent, then it would be good for you to know about the Research Institute for Disabled Consumers (RiDC). RiDC is a user-led research charity, run by and for people with a lived experience of disability. They give practical information for disabled and older people, whether that’s information about being at home, or out in the community and all based on independent unbiased research. They have guides on buying mobility scooters, getting mobility scooters into cars, driving with a disability, specialised hand controls in cars, stairlifts, home adaptations, accessible bathing and showering and even washing machines!
Whilst planning purchases for often expensive independent living aids and trying to make all the pennies stretch as far as you can it is also worth knowing about Living Made Easy. Living Made Easy is a large and trusted online comparison site for sourcing daily living equipment, disability aids or assistive technology. The website is designed and run by the Disabled Living Foundation (DLF) which is a national charity whose purpose is to provide independent advice about independent living for people with a disability, older people, their carers and families. You can search for products, get advice and find the cheapest national retailer.
It is important to know and remember that if you're disabled, the Government says you shouldn't be charged Value Added Tax on items that have been designed or adapted for your personal use – e.g., specialist mobility equipment to help you get around. As this includes products specifically made for disabled people, your supplier, installer or tradesman shouldn’t charge VAT. Your supplier will usually ask you to sign a declaration form stating the item is to be used by a person with a disability.
Do you like movies and the cinema? Do you get PIP? You could well be entitled to a CEA card from the UK Cinema Association. The card enables a disabled cinema user to gain a complimentary ticket for a person to accompany them when they visit a participating cinema.
The Warm Home Discount scheme requires big energy suppliers (by law) to help vulnerable customers in England, Scotland and Wales to pay for energy. Those who are eligible can get £140 off your energy bill. Although the money is not paid directly to you, it is a discount/rebate on your energy bill, between October and March. To be eligible for the scheme you must be on a low income or receive the Guarantee Credit element of Pension Credit. It is suggested that you first speak with your energy supplier to see if they are part of the scheme. The Warm Home Discount also has a helpline that may be able to help, they can be reached on 0800 731 0214.
If you need independent financial advice over money matters for some of the bigger things in life such as making the most of a lump sum of money such as a life insurance pay-out, redundancy payment, an inheritance or planning your retirement, Citizens Advice has some great information. These web pages tell you all about the different types of advisors and how to check they are qualified and registered with the relevant bodies.
There are many other schemes out there, if you have accessed one that we have not mentioned, please do email our helpline with details as your information could help others. Email firstname.lastname@example.org
It’s that time of year again, the sun is out, the mercury is gradually rising and it’s time to welcome in the unpredictable British summer for the next few months. For some people affected by MS, summer can also be a time of concern as the increase in temperature and humidity can cause a temporary worsening of symptoms, so it is important to keep as cool as possible. Allow us to assist you in cooling down with these six tips which you can take advantage of with minimal fuss. Helpline Officer, Shaun shares five handy pearls of wisdom to beat the heat.
Your body contains pulse points that assist in your body’s heat regulation function, situated in areas such as your wrists, ankles, the rear of your knees and your elbow crooks. These are sensitive points of your body where the veins are closest to your skin’s surface, allowing you to access your blood and circulatory system more directly than in other areas of your body. By applying something cool to these areas for 20 minutes or so at a time, such as an ice pack covered with a towel, a cool wet towel or simply a bag of something frozen from your freezer, your body will benefit from a rapid cooling sensation.
Your feet are home to thousands of nerve endings and play an integral part in helping you to control your body’s temperature. Keeping your feet cool can be a quick and easy way to prevent overheating. For example, fill a bowl or bucket with cold water and dip your feet into it, place a damp towel over your feet, spray your feet with cool water or a specialist cooling foot spray, such as ones infused with Peppermint that help to promote that cooling sensation.
Cooling scarves are simply something you tie around your neck with the impact being a full-body cooling sensation. These simple yet effective ties and scarves are relatively cheap and accessible. Some come with replaceable cooling inserts that need to be frozen and others contain polymer crystals that when soaked in water cools the body through evaporation. There are some scarves, shawls and ties that you can buy direct from the suppliers and there are also other options available on the internet. Try Soo Cool, MediChill, or TieChilly, with other providers also being available.
Wearing suitable clothing made of breathable materials is a must in the quest to stay cool. Cotton, linen and rayon are all materials that are breathable and can help your body’s temperature regulation process. Go for lightweight, loose clothing and if you are venturing outdoors also consider the colours you wear. Remember, dark colours absorb more heat than lighter coloured ones, with the science behind this being that the closer to black, or darker, a colour is the more light energy it absorbs. The lighter the colour the more light energy is reflected with the result being that your body stays cooler.
Keeping your home cool is an effective and easy way to help prevent your body from overheating. Some quick ways of doing this include closing the curtains or blinds of windows that are facing the sun, positioning an ice pack or bowl/drinks bottle containing ice in front of a fan to create an air conditioning effect and closing the doors to a room you wish to keep cool to help prevent warm air from entering. Also consider letting the cooler night air into your home by opening your windows once the sun has set, so long as you feel comfortable in doing so..
Staying hydrated is a vital part of helping your body to stay cool, with the Public Health England’s Eatwell Guide suggesting we each consume between six to eight glasses of fluids per day, this includes water, squash, tea and coffee. It is not just about drinking water regularly, when you sweat to keep cool your body loses electrolytes such as sodium which our bodies use to help maintain fluid balance and blood pressure. The good news is that there are easily accessible, healthy drinks that provide a good source of electrolytes, such as Coconut Water and Milk. Foods such as Yoghurt, Bananas, Watermelon, Avocado, Chicken and Kale are amongst a whole host of foods that provide a natural source of electrolytes. Why not try a cold salad on days where you feel particularly affected by the heat, washed down with a cold glass of water or sugar-free squash?
If you have any questions about multiple sclerosis, call our helpline free on 0800 783 0518 and speak to one of our helpline information officers. The MS-UK Helpline is open Monday-Friday, 10am-4pm.
To commemorate Random Acts of Kindness Day 2021, we have designed a pack of postcards to help spread kindness far and wide.
In 2019, we began to research the issues of loneliness and isolation in the multiple sclerosis (MS) community. We found that 71 per cent of people affected by MS in the UK experience these issues, or have done in the past.
Our findings from this research also told us that the MS community believes in the power of kindness and friendship, and we should be sharing this message widely. So, whenever we have a chance to do this, we will!
There are many organisations in the world promoting kindness. Here are some we have found - do let us know if you think of any more we can add, just contact us with your suggestions...
We have been very busy on the MS-UK Helpline, not only answering all your calls, emails and web chats but writing new publications so you can be as informed as possible when it comes to managing your multiple sclerosis (MS).
Spasms and spasticity is a subject that you, the MS community, asked us to write about. Symptoms that are commonly experienced but not always really known what they are, what the difference is, or the many ways in which they can be managed.
This booklet will really help people to understand these symptoms, what causes them and the effects they can have. The booklet explains a variety of self-management techniques, as well as information on physiotherapy, different treatment options, complementary therapies and more.
We surveyed the MS community about how they deal with their spasms and/or spasticity and we had great feedback. Thank you to those who shared their experiences. We have included a number of quotes within the booklet which really help to bring it to life. We do this with all our booklets because we can all learn from other people’s experiences. What works for one person will almost certainly help another.
You can download our new booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
To take a look at our full range of Choices booklets visit our website here. If you can’t find what you are looking for then please do contact our helpline and we will be happy to speak to you. We are here to provide unbiased information and professional support. We also provide emotional support should you just need someone to talk to.
We are here to help you to live a happier and healthier life.
Laura and Ryan
When I was diagnosed with multiple sclerosis (MS) at 23, I was so scared and lonely and in quite a dark place. It was a huge deal for me – I’d only been married for a year and was at the beginning of my career as a nurse. My parents took it very badly, and it was a big, big change for me.
Early on in my journey, I was prescribed antidepressants. They help keep me on an even keel.
Having MS, there are times when I feel very lonely. It doesn’t matter how many people I have around me, I can still feel very alone. Unless they have it too, your loved ones and friends don’t really understand what you’re going through.
Old friends worry about meeting up with me. They wonder how bad I will be – whether I’ll be able to walk or whether I’ll be in a wheelchair.
I do spend a lot of time at home alone, but my little dog helps me enormously. She’s like my shadow and my best friend. Having her, with her unconditional love, has helped me so much. Pets help so much when you’re lonely.
Knowing the MS-UK Helpline is there when I need to talk makes me feel supported.
This year MS-UK's Christmas appeal is raising money to support our helpline, which is here to support people living with MS when they need it most. Our research shows that 71% of people living with MS feel lonely or isolated because of their condition. By working together with MS-UK, you can help these people feel less alone this Christmas.
Did you know that 71% of people living with multiple sclerosis (MS) feel lonely or isolated because of their condition? By working together with MS-UK, you can help these people feel less alone this Christmas.
MS affects around 130,000 people in the UK and 2.3 million people worldwide. Living with a long-term condition that people do not understand can make it hard to stay connected. It can be difficult to maintain independence and often people struggle to reach out and ask for the support they need as a result. This is why services like the MS-UK Helpline are so essential. But it wouldn’t exist without people like you.
MS-UK saw a 44% increase in calls to our helpline in the first month of lockdown alone and we continue to provide the MS community with essential information and emotional support when they need it most. As the Christmas period approaches, demand will be even higher and we need your support to ensure we can be here for as many people affected by MS as possible.
Our research has revealed that people with MS are often too scared to speak out about loneliness for fear of being viewed as a burden. People tell us they feel like a “viewer of the world, not a part of it,” and have “no one to share, communicate and laugh with, turn to, speak to and share worries with.” But with your continued help, MS-UK can be there for anyone who calls our Helpline to listen and provide them with much-needed emotional support.
This Christmas, by donating to the MS-UK Helpline you’ll help ensure no one has to face MS alone.
Thank you to everyone in the MS-UK community who got involved with our World Mental Health Day event on Saturday 10 October. We just wanted to bring all the resources together in one handy place, so anyone can access them in the future.
Here's a list of links for the resources. If you would like any support, please get in touch. MS-UK is here for anyone affected by multiple sclerosis (MS) and you can reach us on 0800 783 0518 or by contacting us via our online web form.
This year we commemorated World Mental Health Day by sharing the findings of our Loneliness and Isolation Report. You can find out more about this piece of research by reading the full report below or visiting the web page.
Our helpline has been busy writing and putting together new publications this year to extend our range of Choices booklets. We asked the multiple sclerosis (MS) community for suggested subjects to write about, subjects that you, people affected by MS, wanted to read about and gain more understanding. Cognition was a popular subject.
Cognitive difficulties are experienced by around 50 per cent of people living with MS. Some will only experience mild, more manageable symptoms, whereas others will experience symptoms to a larger degree.
Speaking about cognition and how it can impact a person and those around them can be a difficult subject to discuss. It can be hard to acknowledge that a person’s cognitive abilities are not as they once were.
We wanted to make it easier to understand the different ways in which cognitive difficulties can impact and to provide a wealth of information on how to manage it including tips from those who currently live with the symptom.
You can download our Cognition booklet from our website here. It is also available in plain text format. You can also order a hard copy and we will post this to you as soon as we are able. Please order via our website here.
All our Choices booklets are sent to our virtual insights panel (VIP) before publishing to gain feedback from people living with or affected by MS. The feedback we received on the Cognition booklet was very positive and included quotes such as:
‘I cannot express how pleased I am that you have brought this leaflet to my attention. I will be highlighting this to other people with MS.’
‘This leaflet is excellent, I feel very strongly that people do not see MS as having cognitive issues only physical ones.’
‘It will be a useful document for those of us (me included) who have issues with cognition.’
It is really helpful for us to receive this feedback to make sure we are producing what is really needed by the MS community. If you would like to join our panel please sign up here.
We will continue to review our current publications and also write new ones when required. We have another new booklet to be published soon too, all about spasms and spasticity. Keep a check on our website for when that comes. If you have any suggestions for other subjects that we are yet to cover please let us know. Email email@example.com We always welcome suggestions.
Laura & Ryan
MS-UK Helpline Click here to download your free Choices booklet
For Carers Week, Laura and Ryan from MS-UK’s Helpline explain what support is available for you
The theme of Carers Week this year is making caring visible. So often carers go about their day and others would not even realise what they carry on their shoulders. They may be out doing the shopping, yet worrying about the person at home they care for, all too often not thinking about themselves. Carers often don’t even identify with the label of being a ‘carer’.
It is so important that the role of the carer is recognised and also that they know where to go for support. We want carers to know there are organisations they can call when they need to chat or ask questions, there are support groups (online and in the community) that are just for them and there are people and organisations out there that care for carers.
Our Helpline would like to let all carers know they can call us when they need to. We are here for you, as well as the person living with multiple sclerosis (MS). We can provide an understanding listening ear, be at the end of the telephone or source you supportive information.
The kind of information we have sourced for carers has been things like
The role of an unpaid carer can be complex and we can help to work through issues at your pace, signposting to more specific organisations where it’s needed.
Our Helpline can be contacted by our freephone number 0800 783 0518, or via email and webchat.
Other great organisations who support carers are
The Carers Trust help to raise awareness of unpaid carers in the UK. You can use their website to search for carer services in your area.
Carers UK offer advice, information and support trough an expert telephone advice and support service. They help connect people through carers’ groups
Please get in touch, we are here if you need us.
Laura and Ryan