So it’s just a fatigue thing?

So it’s just a fatigue thing?

by SleepyBookworm94 ♥ 1 Comment

The title of this post is the reaction I often get when I tell people I have M.E, probably because of its other name ‘Chronic Fatigue Syndrome (CFS).  I hate that such a complex and multifaceted illness is always reduced to this one aspect.  It almost feels like I’m being belittled when someone refers to it as; just a ‘fatigue disorder’ and it’s so frustrating because M.E or CFS isn’t just one symptom.

It’s hard to change people’s opinions and the stigma that surrounds this illness.  A lot of people associate fatigue with tiredness and assume I just need to sleep more or take a nap.  I know a lot of people with M.E hear the line “I get tired too” as if we’re complaining about nothing.  Tiredness can be relieved by sleeping, it’s short term.  Fatigue is not relieved by sleeping or resting, it’s just there all the time.  It’s a bone deep exhaustion, a feeling of constantly swimming against the current, a complete lack of energy, a heaviness that doesn’t just lighten after resting.  Fatigue isn’t tiredness, it’s a much deeper and complex issue and it’s only one symptom that comes with having M.E.

A lot of people misunderstand this illness and don’t understand the span and range that it has over our bodies.  So I thought it would be useful to list the symptoms I experience with M.E:

  • Fatigue
  • Post exertional malaise
  • Muscle weakness
  • Sore eyes after looking at a computer or reading
  • Cognitive dysfunction (brain fog, trouble finding words, a difficulty in following conversations or communicating, trouble concentrating)
  • Nonrestorative sleep
  • Widespread body pain (muscle pain, joint pain, headaches, nerve pain)
  • Allodynia (Extreme sensitivity to touch or certain types of clothing)
  • Sensitivity to sound
  • Orthostatic intolerance
  • Poor temperature regulation
  • Flu-like symptoms (headaches, fever, achiness, enlarged and tender glands, sore throat)
  • Inappropriate sinus tachycardia
  • Cold hands and feet
  • Problems with balance and dizziness
  • Restless legs
  • Exercise intolerance
  • Hyperhidrosis

I experience all of these symptoms on a daily basis which is why I become upset and frustrated when people just refer to M.E as a fatigue disorder.  My whole life and my whole body is affected by M.E and it takes a lot of management to live with.  I wish more people knew this, I wish people didn’t hear Myalgic Encephalomyelitis (M.E)  or Chronic Fatigue Syndrome (CFS) and only recognise the ‘fatigue’ aspect.  It’s so disappointing and disheartening to see it referred to this way because it minimises the extent of the illness and plays down the impact it has on sufferers.

I’ll add a link here to a piece of literature on the M.E Association website, which lists all the symptoms associated with M.E, there are a few more listed here that I haven’t mentioned because I don’t suffer with them, but it may be useful to others:

A-Z-OF-SYMPTOM-MANAGEMENT-FEBRUARY-2020.pdf (meassociation.org.uk)

Gift ideas for gifting to someone with chronic illness.

Gift ideas for gifting to someone with chronic illness.

by SleepyBookworm94 ♥ 1 Comment

I wanted to put together a list ideas for gifting to those with chronic illness.  I know that Christmas can be a tough time for people with chronic illness.  However, I always love when someone buys me something that they’ve put thought and understanding into, something that is meant to make life with chronic illness more manageable or comfortable.  So if you know someone with chronic illness; here are my top gift ideas.

  1. Electric blanket or throw – A lot of people with chronic illness struggle with temperature control.  Since developing M.E I’ve really struggled to regulate my temperature and I find it really hard to warm up or cool down.  I suffer with constant icy skin and it can make muscle and joint pain worse.  I never thought I’d be someone who liked electric blankets, they seem dated…but I wouldn’t be without mine.  It’s one of the only ways I can warm myself up when I’m cold.  I use a full mattress covering underblanket that goes on your mattress and beneath your bottom sheet.  It warms the whole bed and I can put it on a few minutes before getting into bed.  It works really quickly and I don’t even need to have it on for half an hour before I’m feeling toasty and comfortable.  It’s a real life saver in winter.  Heated throws are a good option too, especially if you’re relaxing on the sofa and just need an extra boost of warmth. 
  2. Hot Drinks Maker – I have a coffee/hot drink machine that has made it so much easier to prepare hot drinks.   A lot of people don’t realise how just making a hot drink can be hard but in fatigue and pain disorders, it can be difficult.  I often can’t manage the energy needed to just stand and wait for the kettle to boil.  I also really struggle with muscle weakness so I struggle to pick up a kettle and pour it safely.  I like hot drink makers because it just involves putting a pod in the tray and putting a mug under the nozzle.  The water storage isn’t huge so I can fill it easily and it makes a drink in 30 seconds.  When my energy is low and I just need a hot drink quickly, it’s a huge relief to be able to make one easily and without much effort.  It’s those little things that allow me to be more independent and not rely on someone else to get me something.
  3. Pyjamas/ Lounge clothes – A secondary issue I experience with my M.E is allodynia which means I experience pain when wearing tight or restrictive clothing.  I know a lot of people with chronic illness who suffer with sensitive skin and pain to the touch.  So I find myself mostly wearing pyjamas or loungewear because it’s elasticated and it’s loose so it doesn’t set off my pain response.  I genuinely enjoy getting pyjamas for Christmas because I wear them so much and when you have chronic pain; any measure of comfort that makes you feel a bit more cosy or comfortable is welcome.  A huge hit with me is comfort bras because underwire really triggers my allodynia so sports bras and comfort bras that just have some padding but no underwire or clasps are another big relief.
  4. Automatic pet feeders – Pets can be a huge emotional crutch for people with chronic illness.  Chronic illness is very isolating and lonely so I know pets are an important level of support for chronic illness sufferers.  I couldn’t be without my pets and I’m lucky to live with family who take up a lot of the care responsibilities when I can’t.  But for people who don’t always have that support network, gadgets that make keeping a pet easier could be a really big help.  Automatic pet feeders are a great option because fatigue disorders make remembering things challenging at times, I often have to set alarms to remind myself of chores that need doing.  M.E in particular is a fluctuating condition which means you might be able to do something one day and then not be able to get out of bed the next.  Automatic pet feeders mean a chore is essentially done for you, saving you energy when you don’t have it and covering you when you are struggling to function.  Anything that helps someone with chronic illness live a bit more independently is a good gift in my opinion.  There are lots of pet feeders out there, with different storage capacities and timing slots so pick whatever works best for you or the person it’s for.
  5. EReaders – Chronic illness means spending a lot of time in bed or resting, it can be maddening not being able to do what you want to do.  I’m a massive bookworm and reading really helps me escape my daily life and that escapism is a huge mood boost.  EReaders are one of my favourite inventions because I can have all my books in one place, the device itself isn’t as bulky as an actual book and I don’t have to turn pages manually or hold a book open (which my muscle pain and weakness can make difficult).  Most EReaders allow you to enlarge text and change light options on the screen so it’s easier on the eyes and less likely to cause fatigue.  I prefer the paper-like screens on my EReaders because they aren’t too bright and it doesn’t feel like looking at a screen.  You can also do things like bookmark multiple pages, highlight quotes you like and it saves your progress in multiple books so you can switch between books depending on your mood.  It’s a really useful little gadget.
  6. Takeaway food gift cards –  A lot of the big food delivery companies do gift cards now which I think are a great gift option for someone with chronic illness.  There’s nothing worse than not having the energy to cook for yourself, feeling hungry but not physically being able to make yourself a hot meal.  Someone who’s experiencing a pain or fatigue flare-up may be physically unable to make themself something to eat.  I know I’ve skipped meals because I simply haven’t had the energy or capacity to make anything for myself and it’s miserable.  Takeaways can be a real life-saver for someone suffering with chronic illness.  A lot of people see takeaways as luxury but when you’re too ill to cook for yourself, they are more essential.  I know a lot of people who are disabled or can’t work because of illness struggle financially so ordering takeaways isn’t always an option.  So these type of paid gift cards make a really useful gift option for someone with chronic illness.
  7. Lap trays/ bed desks – Another useful and practical idea for someone with a chronic illness who may spend a lot of time confined to a bed or sofa.  It’s really hard to do anything from your bed without one of these.  When I was studying from my bed, I found it hard to use notebooks or computers comfortably.  You need a flat surface do a lot  of hobbies from bed.  Lap trays and fold up desks are really useful in this situation.  I used a small lap desk that was padded underneath so it was comfortable to use and not too big.  I also use the fold up tables that just go over your legs which can be really useful to avoid stooping over and getting back/neckache when using a computer or writing. 
  8. V pillows, lumbar cushions etc – Chronic pain can make sitting or laying in one position for too long impossible.  Supportive pillows can be a really useful thing for someone with chronic pain.  I couldn’t be without a v-pillow in my bed because I suffer with awful back pain; the way it can curve around my back and provide extra support helps my pain levels a lot.  I find lumbar cushions useful when I’m relaxing on the sofa because I often need that extra back support to be comfortable.  There are so many cushions and support pillows out there and they do make a really big difference to someone with chronic pain, so they make a thoughtful gift.  Just try and find what works best for the person you’re buying for, where their pain may be worse and what cushion would best assist or provide support in this area.
  9. Window bird feeders – Again, being confined to bed can be very boring and it can be depressing just seeing the same four walls for long periods of time.  I bought myself a window bird box when I was struggling with a flare up and I was sick of being stuck inside all the time.  It was just a square transparent box stuck to my window but it brightened my days up so much when birds stopped by.  I’m a huge animal and wildlife lover and I really miss those things when I’m bed or housebound for long periods.  Seeing these birds visiting my window everyday just lifted my mood during those times and let me feel closer to nature despite being stuck inside.  Birds are excellent and finding new food sources and telling all their friends so I had small flocks visiting in no time. 
  10. Streaming channel subscription – There are so many great streaming channels out there now and a subscription makes a great gift for someone with chronic illness who may be housebound.  Being housebound because of illness can be so miserable and lonely, it can really impact mental health.  I think any distraction is welcome in this case, anything that means that person isn’t just sitting with only their thoughts to keep them company.  Streaming services give someone with chronic illness a way to escape and think about something else for a while.  A lot of people subscribe to these channels and it’s an entertainment must have these days, but for someone whose stuck inside feeling ill, it’s a window to somewhere else.  That’s why a subscription to any of these channels is a fun gift option for anyone, but particularly for someone with a chronic illness who needs that entertainment and escapism.  

I hope this list inspires you if you’re struggling to buy for someone with chronic illness.  I think any gift that makes life a little easier or comfortable for a chronic illness sufferer is a great gift.  Just think about what they struggle with and how that struggle might be made a little less exhausting or painful for them.  I love practical gifts that allow me to be a bit more independent or make simple chores less energy draining. 

My tips for managing Christmas with M.E.

My tips for managing Christmas with M.E.

by SleepyBookworm94 ♥ 0 Leave a Comment

All the Christmas adverts have hit and the shops are full of festive food and decorations once again.  The festive period is an exciting one for many; a time to plan parties, buy gifts, overindulge with food, spend time with family and generally just be in good spirits.  At the same time, it can be a stressful time; especially for those struggling with chronic illness or disability.  I know that the festive period is one where I always feel my fatigue the worst, and it’s a time of year where everything is very overstimulating and exhausting.  So I thought I’d share a few of the ways I make Christmas a bit more manageable.

Gifts

When you have a lot of people to buy for at Christmas, it can be an overwhelming prospect.  Especially with fatigue and brain fog; I can decide on particular gifts and then forget what I’ve decided on, I buy gifts and then forget I’ve bought them, I wrap things and then forget what I’ve wrapped and for who.  So I like to plan and keep record of everything I buy and for who.  I start by making a list of everyone I need to buy for (I usually make this list early in October so it gives me time to think of gift ideas) and then when I decide on a gift or have a gift idea, I add it next to a name…then tick it off when I’ve bought it.  Then, when it’s wrapped I note that on the list too. An alternative to individually wrapping gifts is to use gift bags, no wrapping needed, just add the gift and seal it or add some coloured tissue paper to make it look a bit more festive. It’s a nice way to gift things if you prefer not wrapping; it takes less time and energy but still looks good.  I always put festive sticky labels on my gifts straight after being wrapped so it says clearly who it’s for.  I’ve been in a situation where I waited to label everything and then had to unwrap it all to remember which gift was which; so I label everything immediately now.  I always keep the list of names and gifts until after Christmas too so that if people thank me, I know what they are thanking me for.  There’s nothing worse than being thanked for a gift and not remembering what you gave someone and it may seem like a silly thing to forget, but brain fog isn’t logical.

Socialising

Christmas tends to involve a lot more socialising than I usually do.  Getting gifts to everyone, attending Christmas events, seeing family, shopping…it’s a lot of mingling and that can take a toll on my M.E.  As a rule, I tend to try and arrange a day with one person then make sure that there are at least a couple of days between I arrange to meet someone else.  This just ensures I’ve got a rest day in between to recover my energy levels.  I’m lucky that I have understanding friends and family who don’t mind visiting me at home.  I find that meeting people in busy town centres, especially at Christmas is too overwhelming for me and I can’t cope with it for very long.  So I either arrange meetings at home and order some nice food in, or I arrange to meet somewhere I know is quiet, away from crowds.  It makes a big difference in my energy levels. 

I spend a lot of time with family and I enjoy it when we’re all together, it can be tough at Christmas though.  When you’ve got a lot of people all in a small house, children running around excited and high on sugar, a meal being cooked, gifts being given and opened.  It’s something I love but it drains my energy levels very quickly.  When there’s so much going on around me, my fatigue can spike and I find it hard to keep up with everything.  There are a couple of things I do to make this experience a little bit easier to cope with.  Turning background noise off for a bit can help me; when lots of people are speaking and children are playing; turning off any music or tv in the background just means it’s not too much stimulation.  When I’m fatigued, a lot of different noise sources can make it hard for me to follow conversations and interact with people normally.  So I try and turn music or the tv off for periods of time when family are around, it’s just less of an assault on the ears.  I try and take ten minutes out in a quiet room if I’m feeling particularly overwhelmed, just taking those ten minutes regularly throughout the day can refresh me a little bit and let me decompress.  I also help to try and not do everything all at once; take an hour to open gifts and give gifts, take half an hour to clean up all the wrapping and packaging, take a couple of hours for eating dinner etc.  Splitting it into periods of just focussing on one thing means it’s not all going on at once.  Stay hydrated, although Christmas is all about the food and drink, it can be easy to forget simple things when a lot is going on around you.  I always make sure I fill a huge glass or bottle with water or juice before people arrive and leave it somewhere nearby.  Again, I’m lucky to have a family who accommodates this and understands how exhausting overstimulation can be and how my energy levels can be impacted.

Cooking

I’m going to start off here by saying that I don’t cook Christmas dinner, that’s always another family member.  My fatigue and brain fog can make cooking extremely difficult for me.  But, I know other people who have M.E may be the designated cook on Christmas day and I applaud you because I understand the challenge of cooking with M.E.  My advice is to plan everything! Schedule everything the night before and set as many alarms as you need to.  Write it all down; ingredients, cooking equipment, times to put things in the oven, the lengths of time things take to cook etc.  You can’t be too prepared.  If there are things you can prepare the day before and leave in the fridge then that might make it less of a hassle on Christmas day.  Don’t be embarrassed to set hundreds of alarms on your phone for when things need putting in the oven, checking on or taking out the oven.  My main advice is to not overstress about getting everything perfect.  There’s so much pressure on getting the food at Christmas perfect, it can be intimidating.  Personally, the Christmas dinners I’ve enjoyed the most are the ones where something went wrong; the cat eating the pigs-in-blankets off the counter, completely forgetting to cook the yorkshire puddings, forgetting to turn the oven on and realising an hour later….it’s all comical memories and I think that’s more important than perfection!

Wrapping/Decorating

Wrapping presents at Christmas is one thing I put off for too long.  I always end up on the floor surrounded by tape, paper and labels with a heap of presents I’ve left until the last minute to wrap.  So my advice is, break it up!  Wrap a few everyday or every second day, keep a record of what’s being wrapped and label everything.  Find a comfortable place to wrap gifts, I always end up on the floor and then I’m stiff and achy after 15 minutes.  The same advice applies to decorating, do it in sections or split it up somehow.  Focus on just one room for the day or just do the tree, then do another section another day or after an hours rest.  It can be tempting to put it all up in one go and spend the whole day hanging and putting things out but I find this triggers my post-exertional malaise and I suffer for it worse the next couple of days.  So splitting it up into more manageable sections can negate that.

Be Honest

My last tip for managing Christmas with M.E or another chronic illness or disability is to be honest with people about how this festive period affects you and your illness.  It’s always easier to hide how challenging we find this time of year, how overwhelming it can be and how it can have an impact on our health.  But, people won’t understand unless you share this with them.  It can be embarrassing to admit you need a little bit more help or assistance, or that you’re not coping with something, but it shouldn’t be something shameful or awkward.  It’s okay to rearrange or decline social occasions if you think it’s going to negatively impact your health, it’s okay to ask for time alone if you’re feeling overwhelmed and it’s okay to say you’re struggling and need some help.  Christmas should be a time for understanding and acceptance, for being around the people you love without judgement.  It’s important to be kind to yourself at this time of year and not put yourself under too much pressure to be perfect. 

M.E and Winter Illnesses

M.E and Winter Illnesses

by SleepyBookworm94 ♥ 1 Comment

If the covid pandemic taught us anything, it’s how dangerous germs can be; how easily they can be passed on and left on surfaces and how quickly they can spread.  I hoped that this would be a fact that stayed with people after the pandemic and that, people would think more carefully about how they interact with the world when fighting a virus.  Unfortunately I think it’s something that the majority of society has pushed to the back of their mind, ‘now the pandemic is over and done with, what’s the big deal?’  Unfortunately though, covid isn’t the only virus out there that can make people really unwell and there are still people out there with compromised immune systems and those struggling with a chronic illness like I am. 

Every year, that inevitable time of year comes when everyone seems to fall ill with a cold or similar winter virus and I dread it.  I love autumn and winter but winter illnesses can make these seasons risky for me.  My M.E was triggered by a virus 8 years ago, which highlights the fact that although viral illnesses may be short term; they can have real long term consequences on the body.  I used to be a fairly healthy person, I’d catch the common cold and get over it quickly and life would go on regardless.  I miss my body’s ability to fight off viruses so effortlessly and quickly.  Now, a simple cold can be a real detriment to my health, it can cause a full relapse of my chronic illness, it can undo all the work I’ve done to manage my M.E.  It doesn’t matter how much progress I’ve made with my illness because a simple virus can eradicate it all and leave me back at square one, possibly bedbound and unable to live my life properly.

One of the things during the pandemic which I didn’t find novel was the question “any fevers, coughs or runny noses?” when trying to book an appointment somewhere. I’ve asked family and friends a similar question every winter since I became ill with M.E because when living with a chronic illness that makes fighting off viruses and other illness difficult; it’s all about minimising the risk of contracting anything.  I’m sure some family and friends have thought me paranoid or dramatic but I have to do what I can to avoid winter viruses.  I know it’s pretty inevitable that I’ll catch something over winter and more than once, that’s life.  But, I get really frustrated when someone who is evidently unwell takes no precautions to protect other people who may be less overall healthy than they are.  I’m not sure when people became so selfish, where did a thought for others stop entering people’s minds?  Covid should have taught us how easily it is to spread a virus, how badly it can impact some people.  It’s a lesson that I hoped would stay with more people, that would encourage people to think about others, to be more aware of germs and the ways illnesses are spread. 

My blog post today is motivated by an experience at my local supermarket last week, an experience which really annoyed me and made me want to just hibernate away all winter.  Within minutes of walking into the shop I witnessed a woman blowing her nose and coughing.  A fairly normal sight for the colder months but this woman was making no effort to cough into her hands, or sneeze into a tissue.  Instead she was picking up food, coughing all over it then placing it back on the shelf.  She did it dozens of times and she didn’t even seem aware of the fact she was spreading hundreds or thousands of germs over these food items then just putting them back for others to potentially touch. It’s that ignorance that frustrates me because there was clearly no awareness of what she was doing and therefore no attempt to minimise the risk to others. The worrying thing was, I saw a few people coughing and sneezing without an attempt to cover their mouth or nose, there were a few customers who seemed to have a cold or similar illness but not be worried about spreading it on to others instore.  I completely understand that the majority of people have to get on with life when they have a cold or virus, if you’ve got to go out to a public place then you’re entitled to do that.  I just don’t understand why it’s so difficult to carry a mask if you know you are unwell and it may be contagious, we know how important mask wearing was in preventing the spread of covid.  It’s a simple thing to just put a mask on and protect others, it’s a simple way to limit the amount of germs you are spreading when ill.  Even coughing into your hands or sneezing into a tissue is preferred over freely coughing and sneezing into the air; that’s something I was taught when I was a child.  My Mum manages a shop and it’s shocking how many customers come in and when asked how they are, reply; “Oh I’ve got this horrible virus, I’ve been really ill” or variants of it.  It’s scary to me, how many people have no issue going out and potentially passing on their viral illness to someone vulnerable.  I’m not saying that someone with a virus should lock themselves away, I’m saying that the pandemic taught us so many ways of limiting the spread of germs and everyone seems to have completely forgotten them.  Social distancing, mask wearing, carrying sanitizer, coughing and sneezing into a tissue and disposing of it afterwards.  All these things are simple but people just aren’t doing them.

I don’t think healthy people understand how scary a simple virus is to someone with a chronic illness or poor immune system.  Chronic illnesses like M.E are about daily management, struggling with chronic symptoms that affect every aspect of life.  I have to fight so hard to be a relatively normal, functional being and manage all my symptoms and limit the chance of flaring them up.  So adding a virus to that struggle makes management almost impossible and I’m often left bedbound for weeks, relying on other people to care for me.  I’m never sure how badly a virus will effect me afterwards; will I return to my previous level of functionality? or will I backslide and be unable to do things I’d previously started to manage.  Will it cause my M.E to completely relapse and revert to when I was at my worst, how long will this last? A simple winter virus that most people will recover from in a week, or not even know they have; has a huge impact on my life and health.  I just wish more people understood that, I wish more people considered this when going out with a viral illness that could be passed on to someone more vulnerable. 

It’s one of the reasons that people with severe chronic illness feel so isolated; because to keep our health stable, we have to isolate ourselves.  If people can’t take simple measures to restrict how they spread germs and viral illnesses then what choice do we have; but to avoid social contact. 

I guess my advice for chronic illness sufferers this winter is; it’s okay to be selfish if you’re doing it to protect yourself.  By this, I mean, don’t be afraid to ask people you’re meeting with if they have any cold or viral symptoms, don’t be afraid to cancel social appointments if you believe someone there may have a virus.  Don’t be afraid to tell you’re loved ones how detrimental a simple illness like the common cold can be to you.  People may be judgemental and say you’re a hypochondriac, but the people who genuinely care about you will understand and want to keep you healthy this winter.  More importantly, if you’ve got to go out into public places then do what you can to protect yourself; carry sanitizer, carry a mask, distance yourself from people you see coughing or sneezing, wash your hands frequently and try to limit how many public surfaces you touch. Be safe and do what you can to prevent the spread of winter illnesses, because a lot of people are ignorant of the impact these simple illnesses can have on someone with a low immune system or a chronic illness.

(Just a note to say, excuse any spelling or grammatical errors in this post. I am actually currently suffering with a cold and the fatigue and brain fog are currently awful.)

All things spooky: My video game and film recommendations for October.

All things spooky: My video game and film recommendations for October.

by SleepyBookworm94 ♥ 1 Comment

October is my favourite month.  Summer is over and the cooler temperatures are returning, the shops are filled with Halloween decorations (which I pretty much use all year round).  I love Halloween and all the spooky vibes that it brings.  So if you’re looking to get into the spooky spirit; here are my film and video game recommendations!

Films

  • The Nightmare before Christmas – The beauty of this film is that it can be a Halloween or a Christmas movie and I definitely watch it during both holidays because it’s one of my favourite films.  Tim Burton is one of the great creative minds in film.
  • Hocus Pocus – This one is a childhood favourite and I love a bit of nostalgia at Halloween.
  • Halloween and Halloween II – I couldn’t experience Halloween properly without watching these films, there’s something about classic/slasher horror that surpasses modern horror and jump scares.  These two films are classics…although I’m not a fan of the more recent additions to the series.
  • The Shining – I don’t think any spooky movie list is complete without, at least one Stephen King film.  I remember watching this film for the first time and finding it truly disturbing.  There’s something about psychological horror that’s way more scary than other horror genres.  I also recommend the book, it’s just as terrifying, but in a; ‘ I can’t stop reading’ way.
  • A Nightmare on Elm Street – Freddy Krueger is another classic horror character that still scares me.  Robert Englund does an amazing job of making this character utterly terrifying.  It will make you want to sleep with the lights on though, so watch that electricity bill!
  • It (1990 or 2017) – So this is a film I recommend because it’s terrifying but I avoid because I have a real phobia of clowns.  My Mum forced me to go see the 2017 one at the cinema and I actually cried in utter horror the entire movie.  Despite this, I still recommend it because it’s a great rendition of another spine-chilling Stephen King book.
  • The Addams Family – Sometimes I feel like I should have been born into the Adams family because my wardrobe consists of 90% black clothing and I use Halloween decorations as normal room aesthetics.  For those reasons, I love this film because it’s full of spooky vibes and it’s just light-hearted humour.
  • The Conjuring – A movie on the more modern side of horror but one that is pretty terrifying, especially if you believe in the paranormal. 
  • Insidious – Another modern horror movie.  The jump scares in this one legitimately got me tensing in apprehension every few minutes.  Again, it’s paranormal themed and especially creepy if you believe in ghosts and hauntings.
  • Friday the 13th – Another example of classic/slasher horror and it’s got to be included since we actually have a Friday 13th this month!  It’s one of those cheesy horror movies that still manages to be iconic.

Video Games

  • The Evil Within – A survivor horror game that has some pretty disturbing and scary scenes.  It has a really good story and characters, plus the bosses you face are terrifying and I repeatedly had to pause and gather my wits to beat some of them.
  • Outlast – I think any game that involves investigating a psychiatric hospital brings a sense of dread and impending doom; this game delivers that.  Playing it, you know something terrifying is around every corner but it’s impossible to stop playing, even if you are gripping the game controller like a terrified child.
  • Alien Isolation – This is a brilliant game, the whole experience is tense and eerie.  It’s one of those games where you hold your breath as you play, it’s an addictive kind of survival horror.
  • Silent Hill and Silent Hill 2 – An old game that manages to be creepy and eerie without all the amazing graphics and technology that newer games have. I like the way the character is so isolated and it really feels like you’re there; in this terrifying town filled with strange and disgusting things chasing you down.
  • Until Dawn – An interactive horror survival game where the choices you make, change the story and character outcomes.  Playing this game is like watching a film, it’s super cinematic and engaging.  I like that you can play it multiple times and get a completely different outcome, it’s one of my favourites to play at Halloween.
  • Resident Evil – I like the majority of Resident Evil, they’re stars in the survival horror genre.  What’s not to love about zombies at Halloween?  Plus I love games that make you use your brain by solving puzzles and micromanaging your inventory, it adds to the survival aspect.
  • Dying Light – Another zombie survival game.  I like the open world in this one and the way it feels like I imagine a real zombie apocalypse would be.  There’s a lot of parkour and finding ways to navigate the world without being swarmed by zombies.  It’s a fun game experience.
  • Dead by Daylight – One to play if you like multiplayer games and are a fan of those classic/slasher movies. 

There are a lot of great horror movie/video game options if you want to get in the spooky mood for Halloween but these are a few of my personal favourites.  Feel free to share your recommendations!

Comparing achievements with chronic illness.

Comparing achievements with chronic illness.

by SleepyBookworm94 ♥ 6 Comments

Whenever October hits I always feel this internal panic; “there’s only a few more months of the year left and what have I accomplished this year?”.  I feel this more intensely since developing M.E because it can feel like my achievements don’t really to compare to others.  I watch friends find new jobs, get promoted, enter new relationships and I watch my family members succeed at work, bring children into the world, save hard-earned money and go on holidays.  In comparison, my life doesn’t feel very exciting or fulfilling. 

It’s hard to explain how chronic illness turns very normal, regular things into achievements.  I watched someone run a marathon last week, a huge achievement.  Where as, my achievement was getting out of the house for an hour.  It sounds pathetic to me and I struggle with comparing myself to others, more so after chronic illness.  It’s because the amount of effort I put into things has changed, my focus has altered.  Things that I did with no thought before, are achievements to me now.  Some days, my achievements simply consist of taking a shower or hoovering my bedroom; tasks that seem menial to everyone else. It’s never more obvious how small my achievements are compared to others, than when I proudly announce: “I managed to change my bed sheets and wash my hair today!” and people just look at me like I’m crazy.  Because, to a healthy person those acts are simple, they’re routine, they don’t involve much effort. 

At family events, I dread the catch-up.  Hearing about how all my family members are actively out there achieving things; learning to drive, buying new cars, entering a new career, finding love.  Inevitably the questions eventually focus on me and what I’ve been doing with my life…and I always wish the ground would swallow me up, because my accomplishments seem non-existent.  I’m left sitting there, feeling less of a person.  In truth, I know that I should be able to say: “Well, I’ve been fighting chronic illness and managing all my symptoms so that I can function semi-normally”; I shouldn’t compare myself to anyone else and I shouldn’t let other people’s opinions of me make me feel like a lazy and worthless person.  But it’s hard to do that with chronic illness, because there’s so much negative stigma surrounding it.  I  don’t currently work so people think I’m lazy and have no ambition, I haven’t learned to drive so people think I don’t want my independence, I don’t attend a lot of social events so people think I’m rude and selfish, I might have to cancel appointments because I’m too unwell to attend, so people assume I’m unreliable.  So it’s hard to not compare myself to other people because I constantly question my own worth. 

It’s ironic because if someone with a chronic illness complained about similar struggles, I’d tell them that they shouldn’t compare themselves to someone healthy because it’s not fair.  Chronic illness isn’t fair.  I’d tell them that; just living and managing life with chronic illness is an achievement.  It’s easy to give up, stop fighting, admit defeat; but I’ve found that people managing a chronic illness are the most determined and some of the strongest people I’ve ever met.  I just wish I could take my own advice!

Should it matter how big an achievement is? Or is it the act of achieving something, however small, that matters? When the year starts to come to an end and everyone’s discussing their achievements and aspirations for a new year, why shouldn’t getting through another year with chronic illness be enough of an achievement.  Why shouldn’t people with a chronic illness express their personal achievements and feel proud of themselves? 

Chronic illness can take a lot from a person but I don’t think it should ever take our sense of worth.  Every life has worth.  Maybe my achievements aren’t as awe inspiring as others, maybe they aren’t as major; but they are my achievements and it’s those small achievements that motivate my fight against chronic illness.  So I’m going to list a few of my achievements so far this year, no matter how small they may seem to other people or myself at times.  Feel free to share any of your achievements this year, even if it’s just getting out of bed or taking a shower; because those achievements mean you’re still alive and living life, despite the limits chronic illness may place on you.

This years achievements so far:

  • I came off the anti-depressants I’ve been taking for 10 years.
  • I went on a day trip with my Mum.
  • I managed to find time to write posts for my blog.
  • I lost 2 stone in weight.
  • I’ve managed to read over 100 books.

Remember, be kind to yourself.

My Favourite Quotes, living with Chronic Illness.

My Favourite Quotes, living with Chronic Illness.

by SleepyBookworm94 ♥ 2 Comments

It’s hard to feel hopeful and optimistic about life when your living with a chronic illness. The very nature of a chronic illness is that it’s ‘chronic’. It doesn’t suddenly go away. My experience with M.E has been a constant struggle against pain and fatigue; a balancing act with energy levels and living life. Drowning in all that exhaustion and malaise can be so deflating and it can be hard to stay positive and hopeful. The feeling that the struggle is pointless follows me around like a dark cloud and at times it’s hard to see past that hopelessness. But, I’ve always believed that words hold more power than people think; words connect people and feeling. When I read something written or spoken that sums up my feelings, it makes me feel less alone; that someone out there has felt the same way at some point in their life too. So I wanted to compile a list of quotes which have resonated with me; as a person living with chronic illness. These quotes have given me comfort and hope when things have seemed bleak. They remind me that there are others out there fighting the same battle, feeling the same way; but continuing on despite the struggle. They remind me that there is hope and reason to carry on and live life, despite the limitations and obstacles that chronic illness puts infront of me.


⦁ “The question is not how to get cured, but how to live” – Joseph Conrad


⦁ “Often the pain that makes us feel most stuck is not our suffering; it is experiencing distress in the presence of people who expect us to get better faster than we can.” – K.J. Ramsey


⦁ “Promise me you’ll always remember: You’re braver than you believe and stronger than you seem and smarter than you think.” – A. A. Milne


⦁ When you are faced with an on-going medical catastrophe, it forces you to take notice of the little things that you may have overlooked when you were dazzled with good health. You recognize that the little moments are not so little. The appreciation of accumulated small little moments can create a happier life.” – Karen Duffy


⦁ “I can be changed by what happens to me. But I refuse to be reduced by it.” – Maya Angelou


⦁ “It got worse still as time went on because people did not sympathize with you any more. They couldn’t do enough for you at first, and that helped, and then they got bored with your troubles. But your troubles went on just the same and you had to bear them alone.” – Elizabeth Goudge


⦁ “As we sat at the table, acting like the drink wasn’t sour and pulpy, we got to talking about how her illness had come to affect her life. She explained to me that her energy reserves were like that glass of yellow juice. Every action of daily life—getting out of bed, bathing, dressing, doing research—siphoned juice away. Once the glass was empty, no matter how much she had left she needed to do or how much she’d hoped to get done, her body needed to rest. To refill the glass. If she tried to push beyond that, it could knock her out for days. Even weeks.” – Jessica S. Olson


⦁ “Those of us with chronic pain have something unique to offer, not in spite of our pain, but because of it. It’s okay to grieve the losses of chronic illness. It’s okay to be broken; everyone is in some way. Just because we’re unfixable doesn’t mean we’re worthless.” – Allison Alexander


⦁ “It’s my experience that people are a lot more sympathetic if they can see you hurting, and for the millionth time in my life I wish for measles or smallpox or some other easily understood disease just to make it easier on me and also on them.” – Jennifer Niven


⦁ “Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” – Stephen Hawking


⦁ “Never give up. It’s like breathing – once you quit, your flame dies letting total darkness extinguish every last gasp of hope. You can’t do that. You must continue taking in even the shallowest of breaths, continue putting forth even the smallest of efforts to sustain your dreams. Don’t ever, ever, ever give up.”- Richelle E. Goodrich


⦁ “The best way to treat obstacles is to use them as stepping-stones. Laugh at them, tread on them, and let them lead you to something better.” – Enid Blyton

Feel free to comment any of your favourite/inspirational quotes!

What’s in a name?

What’s in a name?

by SleepyBookworm94 ♥ 1 Comment

Myalgic Encephalomyelitis (M.E), Chronic Fatigue Syndrome (CFS), Yuppie Flu, Post-Viral Syndrome; all names for the same condition.  So why do I use M.E? 

The main reason I use M.E to refer to my illness, is probably one of the most common reasons; and that is because it doesn’t just refer to one symptom of the illness (Fatigue), it doesn’t describe it as a flu (short term illness) and it doesn’t imply you can only get it after already being unwell (Post-Viral Syndrome).  Although Myalgic Encephalomyelitis is a mouthful, it doesn’t just refer to a single symptom or indicate a single cause.  The majority of people I speak to, recognise my condition as CFS, even health professionals; it’s difficult for me when I hear this name because it doesn’t fully reflect the range of symptoms that come with this illness, it doesn’t consider the multiple bodily systems that are affected by this disease.

I couldn’t count the amount of times I’ve heard “Oh, Chronic Fatigue Syndrome…so you’re tired all the time?” as a response when I tell people about my illness.  You can’t blame people for recognising the most common name for the condition, but it’s disheartening and frustrating to have a life-limiting condition reduced down to a single symptom that most people assume is just ‘being tired’.  I’m going to use the brief description used by the M.E Association here, as it’s the answer I usually supply when someone assumes ME/CFS is just being ‘tired’: “ME/CFS is a complex, chronic medical condition affecting multiple body systems. It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity”. 

The issue with the name ‘Chronic Fatigue Syndrome’ is not that it only identifies one symptom of the illness, but that people wrongly assume fatigue is the same as tiredness.  It’s something I would have done before I became ill so I understand the mistake.  I’m going to use a couple of quotes here I’ve found online to describe the difference between tiredness and fatigue:

“Tiredness is the way we feel when we don’t get enough sleep. Fatigue is a daily lack of energy that can’t be solved through greater sleep alone.” – The Difference Between Feeling Tired & Fatigue – The Sleep Matters Club (dreams.co.uk)

“Fatigue is more than being tired or sleepy. People who have fatigue feel so drained that their exhaustion interrupts their daily life.” – Fatigue (clevelandclinic.org)

“Fatigue is that feeling of dragging a ton of bricks behind you, having no energy, no gas in your tank,” – Fatigue vs tired: what’s the difference between the two? | Well+Good (wellandgood.com)

Even in clarifying how fatigue differs to tiredness, it still doesn’t address the issue that fatigue is just one of many symptoms that affects someone with ME/CFS.  Not only does M.E/CFS refer to a condition with a number of symptoms, but it can also lead to secondary conditions.  Since being diagnosed with M.E, I’ve subsequently been diagnosed with Fibromyalgia, Inappropriate Sinus Tachycardia and chronic vitamin D deficiency.  So M.E/CFS has a widespread affect on the body, not just on energy levels.  Below is a list of symptoms that I experience with M.E to highlight the various symptoms that can be attributed to M.E/CFS:

  • Joint Stiffness/joint pain
  • Muscle pain/muscle weakness
  • Sensitivity to light or sound
  • Non-restorative sleep
  • Fatigue
  • Insomnia
  • Hypersomnia
  • Post-Exertional Malaise
  • Headaches/Migraines
  • Cognitive difficulties (issues with memory, word finding, sentence construction, communicating, difficulty focussing or taking in information)
  • Sensitivity to infections or viral illnesses
  • Flu-like symptoms (sore throat, swollen glands, blocked nose, fever, achiness)
  • Orthostatic Hypertension
  • Temperature regulation dysfunction (hot flushes, hyperhidrosis, heat intolerance, trouble warming up)
  • Allodynia
  • Exercise intolerance
  • Muscle twitching
  • Nausea

Sometimes it feels as if there isn’t a part of my body that isn’t affected by M.E/CFS, which is why I prefer not to use the name that only refers to one aspect of my illness.  There are those affected by M.E/CFS who are completely bedbound, it’s a debilitating illness and I think it’s important to make people aware of this.  It’s all too common to tell a health professional; “I have M.E”, and receive the reply; “You mean Chronic Fatigue Syndrome”, like I’m trying to make it sound more serious than it is, like my illness isn’t valid, like it doesn’t affect every inch of my life.  There are some health professionals completely ignorant of the fact M.E is categorised as a neurological illness and not a psychiatric illness.  I have a psychiatric illness and I can’t stand M.E being compared to it, or being likened to it.  They aren’t the same, they both affect me in different ways and shouldn’t be lumped into one category. 

So yes, I prefer the term M.E because people are more likely to inquire what the condition is and allow me to educate them; rather than hearing the word ‘fatigue’ and assuming the condition is just fatigue based and assuming I need a better nights sleep.  I’m not offended by those that use CFS or Post Viral Syndrome, and I mostly enjoy raising awareness for this condition, under any name; but it is frustrating when people only focus on an individual symptom rather than the whole illness.  Hopefully some of this post will be helpful to those struggling to explain this illness to others and I hope it highlights why a name can be so important when identifying an illness.

Depression and self-sabotaging thoughts.

Depression and self-sabotaging thoughts.

by SleepyBookworm94 ♥ 7 Comments

Trigger warning – discusses depression and depressive thoughts

Last year I made the decision to slowly withdraw from my antidepressants after being on them for 10 years. I’m currently on the lowest dose and I’m determined to completely finish taking them in a few months; but it’s not an easy process. One of the worst symptoms of my depression has always been the self-sabotaging or self-depricating thoughts that race through my mind. It’s a constant barrage of destructive and hurtful thoughts that bombard my mind:


“You’re useless, You have no worth, You are lazy, Nobody cares for you, You’re a burden to your family, You can’t do anything right, You have no friends, Nobody likes you, You don’t deserve to be here, You’re wasting your life, You’re fat and ugly, You are an embrarrasment, You let people down constantly, You’re a dissapointment, There’s something wrong with you, You don’t fit in, Nothing good will happen to you, You’ll never be good enough, You’re broken, You’re a waste of space, You have no value, You arent lovable, You won’t ever be happy, People will always leave you, You can’t look after yourself, You burden everyone around you”

These kinds of intrusive thoughts are a major symptom of depression and it’s not easy to live with them. It’s even harder to explain them to people who have never experienced depression. It’s easy for people to say “ignore them” or “just don’t think those things”, “tune them out” but it’s not as simple as that. It’s a constant conscious effort to filter these thoughts and identify them for what they are; which is a symptom of depression, an irrational mental error. I compare it to an email system; hundreds of thoughts bombard the brain every minute and I have to consciously filter the valid and important thoughts (rational) from the spam (irrational depressive thoughts). The problem is that there will always be spam that gets through the filter and this is when irrational and intrusive thoughts get mistaken for rational, normal thoughts.


Antidepressants have worked for me over the past 10 years because they’ve numbed my mind so my feelings and thoughts are dampened. Depressive thoughts feel less intrusive and they aren’t as frequent, it’s easier to ignore them. Coming off the antidepressants is therefore like a shock to the system, my mind is suddenly having to work harder to do what the antidepressants were doing. I’m fully aware that my brain has become used to antidepressants and so it almost overreacts to them being withdrawn. My brain is having to balance it’s own chemicals and my mind is in a constant state of anxiety and apprehension.


That’s why I’m writing this post, because it would be easy for me to tell everyone it’s not difficult, to lie and hide the reality of what mental illness is like. I could say that coming off antidepressants is not a struggle, that it’s a breeze. I could let those self-sabotaging and intrusive thoughts weigh me down. Depression makes it hard to talk about feelings and thoughts, it urges you to bottle up your emotions and ignore them until they overcome you. Depression is so destructive because it tells you to keep these thoughts and struggles secret, to fake a smile and say you’re fine. Over the past 10 years I’ve experienced moderate and severe clinical depression; and I’ve learned from that experience. I’ve learned that depression is at it’s strongest when it’s hidden behind a facade, when it’s not spoken about or acknowledged. Knowledge is power and knowing that depression is an illness, admitting that it’s affecting you and talking about it rather than concealing it, is a positive thing. It’s okay to admit you’re not okay, it’s not weak to say you’re struggling. Talk about it, write about it, express it however you need to; don’t hide it.

Winter Warmers and M.E

Winter Warmers and M.E

by SleepyBookworm94 ♥ 1 Comment

With the temperatures dropping so quickly and it finally feeling like winter has come, I thought I’d write about the tools I use to keep warm during these cold months.  Anyone with M.E or Fibromyalgia will know that the cold can be a major trigger for pain and discomfort.  M.E and Fibro often effect the bodies temperature regulation system so it’s hard for us to cool down in the summer and hard to warm up in the winter.  My M.E comes with a lot of joint and muscle pain which worsens during the winter months, my body struggles to warm my limbs up and it often results in ice cold skin and stiff joints.  It’s hard to explain the feeling of cold bones and I’ve only struggled with it since developing M.E; it’s like the cold has penetrated my skin and frozen my bones solid so any movement hurts.  It’s easy for people to say ‘put a jumper on’ or ‘wear more layers’ but when the cold has penetrated so deep into the body, even those extra layers don’t seem to help.  So, I thought I’d list the things I do and the items I use to warm myself up during winter.

  • Shaped hot water bottles.  Gone are the days of the typical hot water bottle, you can now get them in all kinds of different shapes.  My favourite are the long hot water bottles because they stretch the whole length of my legs, making them perfect for warming up my limbs when my circulation is bad.  My legs are the hardest part of my body to warm up but sitting under a blanket with one of the long hot water bottles provides some immediate warmth.  The long bottles are very versatile because if you don’t fill them too full, they are flexible and can wrap around your shoulders or wrap around the lower back to provide some lumbar comfort.  There are also other shapes and variations that are useful; ones shaped to fit around your neck and shoulder area, tiny ones for your hands and feet, ones with a teddy cover so their super soft on the skin etc.  An alternative that is also useful are the microwave wheat bags, which also come in various shapes and sizes.
  • Fleece lined clothing.  I always buy fleece lined clothing for the winter because it protects you better when you need to be out in the cold and it’s soft on the skin, which is useful if you also suffer with allodynia (painful and sensitive skin).  My favourite purchase this winter has been some fleece lined leggings, they’ve been a huge help in protecting my legs from the cold.  It’s an extra barrier for the cold to get through so it prevents my legs becoming too cold when out and about and they are just a small piece of comfort for my aching bones and muscles.   A fleece lined hoodie or jumper is a good choice for indoors when it’s chilly and you want to prevent putting the heating on until you must.  Also, fleece lined socks and slippers are my essential for winter because my feet are always like ice, and I find that if my feet are warm then my body warms up faster too.
  • Hot drink maker.  I’m a coffee addict so I adore my Dolce Gusto coffee machine and it gets used a lot during the winter.  Coffee machines vary in sizes and prices, there are the more expensive luxury brands and the cheaper, smaller machines.  You can get a Dolce Gusto machine for under £100 and even under £50 at times.  They are well worth the money.  I have the Genio S Plus machine and the thing I love most about it is, it’s quick and doesn’t take any of my energy up.  Kettles are often heavy and M.E can give you muscle weakness and joint problems so lifting a kettle isn’t always easy.  The water tank on my machine can be pulled out but it also has a removable lid so you can fill it with a jug which is easier if I’m unable to lift anything heavy.  It’s a useful gadget for winter because hot drinks are a good option to warm up, especially after being outdoors.  My machine also has a temperature choice so it pours the hot drink at a temperature where I can drink it immediately, it’s useful when I just want to grab a hot drink and get in bed. 
  • Electric Blanket.  The best gift I’ve ever been given!  If you’re struggling to think of a gift for someone with a chronic illness, then an electric blanket is a great choice.  I have one that goes over the mattress and under the bottom sheet.  You can get ones that are more like throws and go over your body, but I find the under-sheet ones warm the bed for longer.  When my skin is like ice and my joints and limbs are sore from the cold, my electric blanket is the best thing to warm me up and get some feeling back into my body.  My electric blanket can be set to warm for 9 hours or just an hour so it’s easy to operate and I usually only need it on for an hour, then my bed is warm for the night.  It’s a really useful item for the winter and it has helped my aches and pain so much at night.
  • Arnica Gel.  Maybe a strange one but I use arnica gel a lot during the winter because my muscles and bones hurt so much.  Arnica Gel is a herbal product that has pain relieving qualities and I bought it a few years ago to try, I didn’t hold out much hope, but it has been excellent in relieving my muscle pain.  It also has a warming effect when it’s applied which is nice during the cold months.  If you have any allergies or skin sensitivities, then I’d recommend speaking to your GP or pharmacist first.  But if you haven’t tried it and are looking for a medication alternative for your pain then I recommend this.  I found that I didn’t need to take my pain medication as often when I used this gel, and it works really well for my regular aches and muscle pain.
  • Heated slippers.  I’ve often used heated slippers when my feet aren’t warming up easily.  You can get some that go in the microwave or boot ones that plug in to an electrical socket.  It’s a useful item to quickly warm your feet up and perfect for lounging about and keeping toasty.  Like I’ve said above, when my feet are warm it makes my body easier to warm up. 
  • Teddy bed sheets.  I love teddy bed sheets in the winter because they are just perfect for retaining heat and making the body feel cosy and warm.  They are super soft on the skin and there’s none of that ‘cold sheet’ feeling when you first get into bed.  M.E often means spending a lot of time in bed, so I think it’s important to make the bed a nice and comfortable place to be.  Teddy sheets are a simple way to make your bed feel a bit more luxurious and cosier.  You can kit your whole bed out with teddy sheets or just buy pillowcases or an under sheet, it depends on your preference but they are a great item for winter.

So, there’s my list of winter warmers, a lot of these would make great gifts for someone with chronic illness.  It’s nice to receive a present that shows someone has considered your illness and purchased something to assist in the management of it.  People always ask me if I’m tired of receiving pyjamas at Christmas, but I never am because pyjamas are what I spend much of my time in when I’m housebound.  I hope this list is useful and I hope everyone with M.E or any other chronic illness stays warm this winter.  I want to add that it’s a hard time right now for people, with the cost of electricity and raised cost of living.  A lot of people with chronic illness use electrical items to relieve pain and manage their illness so it’s difficult when energy costs are shooting up.  I don’t receive any warm home discounts or payments from the government because I live with my parents, therefore I don’t pay the bills, which means I don’t qualify.  It’s maddening because the cold can negatively affect my M.E so I can’t avoid putting the heating on or using my electrical warming items.  In my opinion, the government has let thousands of people with chronic illness and disability slip through the net this year and it’s made living and affording essential items difficult. It’s frustrating and disappointing.  There needs to be more recognition and aid for those suffering with chronic illness and disability, as well as more help for carers.