Chronic Illness Friendly Gifts Haul

8th Jan 20216th Jan 2022 memyselfandchronicillness3 Comments

Happy New Year everyone and welcome to my first blog post of the year. I can’t believe we are in 2021 already, but I am excited to be back blogging and have many ideas for the months ahead.

Over the festive period I watched a lot of YouTube videos and noticed that a lot of YouTubers and influencers do videos about what they got for Christmas, so this has been my inspiration for my first post. I thought I would share with you the chronic illness friendly gifts I received at Christmas and why I feel they are beneficial to my chronic illnesses.

Please note gifts are not about expense, they are about finding thoughtful ideas which mean a lot to another person. Smaller things are often things that mean the most.

Items to keep me warm

As any chronic illness warrior will know keeping warm is a must. My conditions impact my circulation so I am cold the majority of the time. With this in mind I was delighted to receive a brand new fluffy hot water bottle and a mustard yellow bobble hat – both great additions to these cold winter days.

A Massage Gun

Alongside my Fibromyalgia pain, I do get a lot of muscular aches and pains from my body tensing due to my Tourette’s. The massage gun comes with a variety of different heads designed to help with a variety of problem areas on a deep tissue level. Whilst I wouldn’t advise this for Fibro pain because the vibrations can actually hurt your body (and it did mine) I have found it helpful for specific knots.

Skin Products

My skin is so sensitive it is unbelievable, so much so I tend to struggle with even the ‘sensitive friendly’ products you often come across. I am yet to try these, but my mum gifted me the cutest beauty products in the form of Simple facial wash, micellar water and moisturiser. A couple of them are hypoallergenic (REMEMBER to always check when using products yourself) and contain less plastic. So watch this space with how I get on.

A selection of books and films

Being chronically ill you are often struck down with days where you really can’t do a great deal so having items such as books and films are a great resource to pass the time. I received a variety of films including Christmassy ones such as Last Christmas and horror ones such as IT Chapter 2 which I can choose based on my mood and books from my favourite authors Erin Green and C.L. Taylor.

Stretchy Dresses

I know a lot of people with chronic illness like to wear comfy clothes that are easy to wear and don’t require much fuss, I have to confess for me that consists of skirts and dresses more so than trousers. I was lucky enough to receive two dresses for Christmas which are comfortable and stretchy all whilst remaining stylish. These are perfect for someone like me who often has a bloated stomach as I don’t have to worry about anything digging in.

Money

One of the most useful gifts you can receive as a chronic illness person is money. Being chronically ill and working class I struggle for money a lot and having money gifted to me allows me to buy those things I need the most, yet often cannot afford. Not having money also makes you think more about spending it on worthwhile things and not just blow it on any old thing, so I am still planning what I would like to spend it on and what I am of need of the most.

Other Gifts

Art Gallery Gifts – Art Galleries are a huge hobby of mine and the art displayed in them often evokes an air of mindfulness for me not many other activities do. Even without current times I do struggle getting to galleries so gifts which enable me to enjoy the atmosphere in my own home is amazing.

Duvet Cover – Mug – Diary

Here you have it the chronic friendly gifts I received this year – I am so grateful for the gifts I got and thankful the buyer considers my chronic illness needs. I think chronic illness buying can be quite a difficult task for people who don’t have chronic conditions – did your loved ones consider your needs this year?

Chronic Illness · Mental Health · Personal

Review of the Year 2020

17th Dec 2020 memyselfandchronicillness3 Comments

Well what can I say other than 2020 has been a year I think none of us will forget. I don’t want to make this a post about the pandemic because we see that everywhere, but I would like to talk about how 2020 has changed for me on a personal level and the chronic illness community in general.

Chronic Illness Community

I think if there is anything to take away from this year it is the notion that lockdown has enabled other people to see what life is like for the chronic illness community on a daily basis. From not being able to get out of the house, to having plans cancelled, limited social interactions and a sense of a never-ending conclusion – ‘healthy’ people have had a taster of what our lives are like.

I would like to say moving forward people will be more mindful when it comes to the lives of the chronically ill and disabled, but like with anything in life there are no guarantees. I think there are definitely a ratio of people who are now more understanding and thoughtful to the reality of chronic illness, yet I also believe there are a huge number who still don’t necessarily care or are bothered because ultimately it isn’t them.

NICE Guidelines

For my fellow ME/CFS sufferers here in the UK, there was some good news in the form of the NICE guidelines stating that graded exercise therapy (GET) should not be offered for the treatment of ME/CFS. This is a welcome relief for many sufferers who have often been advised and in some cases pushed to up their exercise levels with the idea it would help when in fact it was only make things worse.

My Personal Health

My health has been very up and down this year with me receiving my fifth diagnosis in the form of Undifferentiated Connective Tissue Disease (UCTD) several months ago. This led me onto the track of trialling medication which has had its pros and cons. I am still ill most days and at times I can’t even tell which condition is causing which symptom anymore, I have so many.

This year I also experienced a collapse which led to a visit from the paramedics and after some not great blood test results has led to another referral to another clinic for yet another second opinion. This is scheduled for the start of 2021 which was a slight shock because my consultant had said they didn’t need to see again for 12 months, but after my collapse that got changed to three.

It’s funny really when chronic illness has been a part of your life for so long, you are no longer phased by another appointment. Once upon a time these appointments would scare me, but now I have accepted I am ill I take it a lot more in my stride because whilst my physical health is still taking a battering, my mental health has improved.

Me, Myself and Chronic Illness Blog

I think what has been helping my mental health and has allowed me to take things in my stride is this right here – my blog and all you wonderful people who have ever read one of my posts. I can’t believe I started my blog in April this year, with my first post going live at the beginning of May. Since then I have done 51 posts covering (I hope) mainly topics surrounding chronic illness and mental health.

I have many ideas lined up for the blog going into 2021 which I hope will be useful and interesting to you all. However I am always open to any topics or ideas anybody has so feel free to leave me a message in the comment section or contact me on Twitter or Facebook and I will do my best to follow up on them.

I want to finish up by saying that this will more than likely be my last post for 2020 as I will be taking a break for Christmas. I want to thank you all for your support and having you take the time to read my blog means the world to me. Here’s to a Happy New Year for us all.

Lots of Love

Sarah xx

Activities · Christmas · Chronic Illness

Top 5 Christmas Activities for Chronic Illness Warriors

10th Dec 202010th Dec 2020 memyselfandchronicillness8 Comments

Seeing as people seemed to enjoy my post back in the summer about the top 5 summer activities for chronic illness warriors, I have decided to do a Christmas version.

Christmas is traditionally seen as a time of year which is full of fun with never ending events and things to do. However when you are chronically ill some of these activities may not be appropriate inline with your body’s needs and your energy levels.

As we all know this year is going to be a very different year anyway, but I would like to share with you my top activities at Christmas when you have chronic illnesses.

1 – Feast on festive treats

One of the best things to do at Christmas time is snuggle up on the sofa with a big Christmas sweater and enjoy a nice mug of hot chocolate (marshmallows and cream are hard to resist!). Perfect for a chronic illness warrior because you are not only getting a festive treat, but you can relax on the sofa whilst doing so and stay true to your normal attire of baggy clothes for comfort just with a funky festive flare. Obviously this is allergy and diet dependent, so you may need to make adjustments where needed, but this time of year there are many Xmas foods you can divulge in.

2 – Watch Xmas films and/or tv

Watching films and/or television is a great chronic illness activity as it allows you to chill out and relax on the sofa or in bed without much physical activity. Christmas films and shows are a great form of escapism which in turn can give you a focus on something other than feeling unwell. Remember you can adapt this activity to your individual needs by choosing the length of film/programme you watch and deciding if this is an activity you would like to do alone or with others. For ideas on the best Christmas films to watch you can check out my blog post on my top Christmas film picks here.

3 – Sale shopping

I did debate a bit about whether to add this to the list because I am aware shopping (physical or online) can be very energy draining especially on a time line. I for one find shopping an activity which can wipe me out for days on end even if it is done through my computer. However if like me you find being chronically ill greatly effects your finances then finding bargains in the sale can be a lifeline on items you desperately need, but cannot normally afford. If doing this yourself is too difficult maybe you could put a list together of things you particularly need and ask someone else to do the investigating for you!

Photo by Karolina Grabowska on Pexels.com

4 – Give back to charity

When you live with chronic illness a lot of your time can be taken up with having to think about your own needs (and how most of the time you are not listening to them), but Christmas is that time of year when you can be thankful for what you do have. Giving to charity is a wonderful way to allow yourself to take a moment and reflect on other people who are in the same boat as you (or worse) and make donations to the charities who are a lifeline to people in their moment of need. Remember it is not about the amount, but the thought and your donations do not have to be financial, they can be time or task related instead.

5 – Look to next year

As I have already mentioned Christmas is always a reflective time of year. The time of year to think about the year just gone and the new year ahead. Living with chronic illnesses this is maybe more poignant than it is to most others. Going into a new year unfortunately is not going to cure us or in most cases make us any better, yet that doesn’t mean you shouldn’t have hope and goals for the future. I was always somebody who would make new years resolutions and beat myself up for not being able to achieve them when really they were always going to be unachievable with my conditions. Instead of making new years resolutions why not highlight your achievements for the year and remind yourself of how amazing you are, and how you can take these skills with you into the new year.

So here you have it – my top Christmas activities for chronic illness warriors. Hopefully you find these suggestions helpful, but remember there is no right or wrong. Your Christmas should be spent in your way, so enjoy!

Activities · Christmas · Films

Christmas Films – My Top Picks

3rd Dec 2020 memyselfandchronicillness7 Comments

Following on from my top Halloween film picks, I couldn’t resist sharing my top films for Christmas. Christmas can be a very difficult time for people with chronic illness due to the various activities, communications and heightened visual and audial disturbances, but watching films can be a great activity to do with others or alone. It is just a case of picking the right one so let’s get started….

Let’s get right to the crunch and dive straight in with proper xmassy films: The Santa Clause and Elf.

The Santa Clause is one of my most favourite Christmas films of all time. Starring Tim Allen the movie is about a father who transforms into Santa. This is a great watch if you enjoy seeing the north pole in all its glory and love the magic of believing. Keep a look out for the various elves in particular Judy who makes the perfect hot cocoa.

Elf starring Will Ferrell is a must see for Christmas fanatics. The movie is centred around the story of Buddy – a human who was raised by elves – who after discovering he is not an actual elf goes on a journey to New York City to find his biological father. This film is filled with festive cheer as Buddy explores this new world with an elf mentality. – Son of a Nutcracker!

Ok so I know not everyone loves a Christmassy film at Christmas so let’s take a look at my top non-Christmassy films that are considered Christmas films – if you catch my drift: Bridget Jones’s Diary and Home Alone.

Bridget Jones’s Diary is a romantic comedy that definitely resonates with me. Starting at a Christmas party with that disastrous Christmas jumper and Bridget trying to combat single life. That soon changes however when she has two men vying for her affection in the form of Daniel Cleaver and Mark Darcy. The movie has some great scenes and funny moments especially in the form of Bridget’s friends alongside a very catchy soundtrack.

Home Alone is the ultimate Christmas comedy about a young boy being left you guessed it – home alone. I think most people probably know the story by now and if you don’t I really recommend you watch it. There are some great performances especially by a young Macaulay Culkin and is definitely a great pick if you want a few laughs over the festive period.

So we have the Christmassy and the not so Christmassy films, but now I want to share some shorter stories for my fellow chronic illness warriors who may find viewing longer films too much on their bodies. I give you Raymond Briggs’s The Snowman and Father Christmas.

The Snowman – This Raymond Briggs’s classic is a visual masterpiece and so beautifully crafted. It is also the story that brought us Walking in the Air and a lot of flying snowmen. For such a short story it sparks the magic and excitement of Christmas as well as a slight tearjerker at the end (I won’t spoil it for you).

Father Christmas – Again this Raymond Briggs’s classic has the same visual beauty, but this time follows Father Christmas on his year from one Christmas eve to the next. This has a funnier element to it then The Snowman, with Father Christmas getting up to all sorts of adventures.

For the eagle-eyed viewers amongst us you may notice that both short stories give cameos to each other with The Snowman featuring in Father Christmas and Father Christmas featuring in The Snowman, so it is a lovely nod to each story. If you want something short that gets you in the festive mood I strongly recommend this picks to make you smile.

Here we have it my top picks for Christmas – of course there are many others, but I wanted to keep it simple. So what will you be watching this year?

Activities · Christmas · Chronic Illness

Low Cost/ Low Energy Gift Ideas for Others

26th Nov 2020 memyselfandchronicillness12 Comments

There is no getting away from it – Christmas is getting closer! Seeing as it is the season for giving I thought it would be a good idea to talk about gifts you could give to your loved ones. I for one absolutely love the festive period, but living with chronic illnesses I find a) I don’t have the funds to buy elaborate presents for others and b) I don’t have the energy for boundless shopping (even if it is online).

With this in mind I have tried putting together five gift ideas which are low cost, easy to source and don’t require too much effort. Hopefully these inspire you to put together your own gifts, so enjoy getting creative!

Gift Idea 1 – Themed Jar

This idea is pretty simple all you need is a mason jar of any size with an idea of what the recipient likes and fill it. This could be in the form of beauty products, art accessories, socks, a specific hobby etc. Last year I actually used a bucket rather than a jar and filled it with car accessories as my relative had got a new car. For the purpose of this post I have chosen a baking jar.

My baking jar contains:

Reindeer and Christmas Tree cookie cutter
Pack of sweets
A glass bottle containing Golden Hundreds and Thousands
A glass bottle containing Silver Edible decorations
Red and green decorating icing
Wafer daisies
Spotty fairy cake cases

To decorate the jar I used crafts I had at home including a reindeer ribbon and a wooden tag with a Christmas tree print.

Gift Idea 2 – A Christmas Decoration/A Snow Globe

This was probably my most favourite item to make because it is very straight forward yet looks very pretty and gives that personal touch. Once again you need a humble mason jar, some simple decorations (which you could take from your own tree) and some fake snow.

If you want to make this as a simple decoration like mine all you need to do is add all your bits inside the jar, but if you would like to make it as a snow globe glue your decorations to the lid so when you shake everything stays in place.

My Christmas scene includes:

Faux snow
Snowman decoration
Post box decoration
Berry decoration (held in snowman’s hand)
Cone with wire
Blue sparkly ribbon

Gift Idea 3 – Little Box of Love

This idea is very similar to the jar ideas, but on a smaller scale. Again you can pick any theme you would like or choose lots of random items. I chose to make a stationary box which I decorated myself with my own crafts and filled with tiny stationary items.

My Little Stationary Box includes:

A wooden box (already made) – which I decorated with paint, and stocking, skates and snowflake sticker embellishments.
Pen
Stapler
Staples
Rubber
Gel pens
Key ring (not very stationary I know!)

Gift Idea 4 – Chocolate Bags – Best Low Energy Option

If crafting is not your thing or is too energy consuming then an easier option would be choosing someone’s favourite chocolates or sweets and presenting them in a cute Christmas bag. Who doesn’t like delicious treats at this time of year?

My Chocolate Bag includes:

Cellophane Santa bag
CHOCOLATE – Remember by doing this yourself you can cater to allergens and vegan options if needed.

Gift Idea 5 – Memo Memories – Best Low Cost Option

This option is for anyone who is finding money a real difficulty this year (or any year) – I feel you and trust me I am using this myself. This is actually probably the most thoughtful gift of the lot which will mean so much because it focuses on memories. You can use any medium you like whether that be a box, a jar, a container or even an empty cereal box – anything you can find in the house.

Got it? Great now all you need is paper and pens – again in whatever form you have them. Craft paper, wrapping paper, plain paper, card whatever you have. As long as you have enough to make say 10 (maybe more) squares which you can add writing to. Once you have made your squares all you need is your imagination.

On each square write a memory, a film, a song lyric, a photo anything that is personal between you and the person you are making it for. Once you finished them, fold them up and drop them in your container with a little message to the recipient to take one out when you see fit. Maybe one every day for the 12 days of Christmas, or when they are feeling sad, or when they want to think of you. The point being it should be a great way to remind them of why you love them and the happy times you have shared together – what could be better than that?

So there you have it my five ideas for low cost (hopefully low energy) gifts for others. Remember it is the thought that counts and there is no rush with how long it takes you to put things together. Remember there are always gift vouchers!

Activities · Chronic Illness · Mental Health · Stress Management

Gratitude Lists

18th Nov 2020 memyselfandchronicillness4 Comments

Living with chronic illness it can be difficult at times to see the positives in your life. What with the endless mental and physical symptoms attached to your condition/s, in some cases the inability to work, be financially stable, have your own property and maintain relationships – life can be very difficult.

The last month has been a trying time for me with my conditions (which you can read about here) and I took a dip both mentally and physically. However the thing that has kept me going is the thing that always keeps me going – taking the time to appreciate what I do have in my life.

Gratitude lists are a great tool in realising that even in your most difficult times, there are still things in your life to be grateful for. No matter how small.

There are many ways you can create gratitude lists, it is just dependant on how much time you would like to dedicate to it. Some people may find writing one thing down each night that they have been grateful for that day helpful, whilst others may like to make a list in one go once a month. Alternatively you may find it useful to do one in times when you need a pick me up. The point is it should provide you comfort in your most difficult times and a go to resource to remind you why your life is good.

So what should you add to your gratitude list? This is a list which is unique to you so whilst you may have some generalised items you can have personal items specific to you too.

E.g. My generalised gratitude list includes:

Family
Access to food/drink
Roof over my head
The sun
The trees
Colours
Books and the ability to read
Warm bobble hats
Hot water bottles

E.g. My personal gratitude list includes:

My strength
Anyone who has helped me on my journey
My determination
My achievements big and small
My ability to keep going even when I want to give up

If you want to write daily gratitude lists, try and write about things that have happened to you that day which made you smile.

E.g. Wednesday gratitude list

Had a shower
Finished a chapter of my book
Had someone pay me a compliment
The weather

Another take is to give yourself themes to work around. From picking a season of the year (autumn) to a holiday you enjoy (Christmas), or even breaking down a gratitude you have already said and listing why you are grateful for it. You could even give yourself the alphabet challenge and list one thing beginning with each letter of the alphabet (if you can!)

E.g. My alphabet of gratitude includes:

A is for Air
B is for Blogging
C is for Countryside
D is for Dublin etc. etc.

Remember you can make it as serious or as fun as you want.

There you have it if there is one thing you do to make yourself feel better – make a gratitude list. There is no doubt life with chronic illness is hard, but remember to hold on to the little things in life; they are what will get you through.

So what are you grateful for?

Chronic Illness · Mental Health · Symptoms

Getting Better – Fantasy vs Reality – Health Update

11th Nov 2020 memyselfandchronicillness1 Comment

Today’s blog post is a little bit different to normal as I am going to share with you what has happened to me over the last few weeks. I haven’t blogged for about two weeks which has been extremely difficult as blogging has given me a focus of late – a sense of feeling ‘normal’ again whatever normal means these days.

You may or may not know I have five chronic conditions all of which affect me in different ways and on different levels. I don’t say this much but sometimes having multiple illnesses is just plain hard what with having symptoms every single day and having to accept it. The point is though after many (and I mean many) years of denial I had started to accept them as being part of my life.

So why am I talking about this? Well recently I was placed on medication in relation to one of my conditions. This was the first time I had been offered any sort of medication for any of my conditions and was feeling positive about it. I was told the initial settling in phase may give me side effects, to which I accepted because I am so used to being ill what’s a bit more illness. But I got through the initial side effects even when at times I thought I wouldn’t because I had so much faith things would improve and it did. A few of my symptoms whilst they didn’t disappear seemed to be better and that was when I made the mistake of believing I was getting better.

Feeling small improvements in myself started making me overlook any issues with symptoms I had. Instead I was trying to convince myself that it wasn’t that bad, things were getting easier completely dismissing the fact that I have five conditions and this medication was only for the one – that and the fact it was only designed to help with a fraction of the symptoms associated with this one condition anyway.

My desire to be cured made me push on and set myself targets that were way above my ability. But that wasn’t really the problem, the problem was around two weeks ago I started feeling really ill again and any improvements I saw seemed to be disappearing again. It was then I had a horrific evening and collapsed ending up with a visit from the paramedics. Recovery has been slow and it has taken a lot longer than expected, my body just seems its in a ‘meh’ state and finds functioning too much to deal with. To top it off my collapse may mean now I can’t stay on my medication and keep those small improvements it has made.

I don’t know why I collapsed and I am still awaiting test results, but part of me wonders if I pushed myself too much all in my quest to be cured. It’s sad because I have been unwell for so many years and yet here I am still waiting for that magic pill that is going to make it better. Waiting for that fairy tale ending where suddenly everything is going to fall into place and I can live a ‘normal’ life. But this isn’t a fairy tale this is reality and this is chronic illness.

I wont lie to you having my body fail me yet again did affect my confidence. I had so many plans in terms of things I wanted to blog about and get involved with and having my body back to a unfunctional state made me want to stop. I just felt like I had come so far and I was back at square one again. But I guess that same statement is why I am typing right now because I have come so far. Physically things are not great right now, but mentally I am getting back to a good place.

Whilst this might not mean much to others this blog is important to me and I am going to strive to continue so watch this space….

Activities · Films · Halloween

Halloween Films – My Top Picks

30th Oct 202027th Nov 2020 memyselfandchronicillnessLeave a comment

Living with chronic illness it can be hard finding activities you can enjoy that are low energy, so with Halloween around the corner now is the perfect time (chronic illness or not) to emerge yourself in the world of film.

The genre of horror has such an array of different categories it really can be for anybody. From slasher to psychological and comedy to monster, the choices really are endless. So with this in mind I have selected my top films to watch this Halloween if you dare….

FYI – Please note all these films should only be watched if age appropriate – always check the certificate.

Kids Halloween Film – The Witches

Let’s start gently with a good children’s Halloween pick (also ideal if you are not a big horror fan) and my top recommendation The Witches. You already know this is a great pick as it is based on the great children’s book of the same name by Roald Dahl. Although there is a new version for 2020 I still believe the 1990 version starring Anjelica Houston as the Grand High Witch is brilliant.

Runner up – Casper

Comedy Horror – Shaun of the Dead

Runner up – Scary Movie

Splatter Horror – Saw

People have very mixed views on the franchise that is Saw and the mastermind behind it Jigsaw, but for me Saw was one of the best horror franchises I have ever seen. As with a lot of films I found the very first film the best which centres around two men being chained up in a room and not knowing how they got there. The twists and turns are highly entertaining and the plot twist at the end was something I never saw coming. Not forgetting of course the array of games that are played throughout the film and the gore they produce.

Runner up – Hostel

Slasher Horror – Halloween

Runner up – The Texas Chain Saw Massacre

Supernatural Horror – IT

There are so many worthy supernatural horrors out there, but one of the most memorable is Stephen King’s IT because lets face it what’s scarier than a creepy looking clown? Pennywise (the clown) is actually a shape shifting monster who forces the characters to face their scariest fears. The film is actually split into two parts (so you need to watch the second film to get the whole of the story) as the children from the first film come back as adults and try to defeat the clown once and for all.

Runners up – Sinister and the Blair Witch Project (I couldn’t resist picking two!)

Monster Horror – The Babadook

Runner up – A Quiet Place

Psychological Horror – Escape Room

Now not everyone would call this a traditional horror as this film is about six people taking part in a mysterious escape room experience which quickly becomes more real than they were expecting. Watching the players go from room to room you feel yourself go along for the journey on the different challenges they face.

Runner up – The Belko Experiment

Other strong recommendations on my little list of horrors include:

Mama
Scream
Wicker Man

So here you have it my top film list for Halloween this year – what are yours?

Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · PCOS · UCTD

Family, Friends and Chronic Illness

23rd Oct 2020 memyselfandchronicillness2 Comments

You think I would be used to it by now the subtle eye rolls, the exchanged looks of ‘here we go again’ and the deep sighs of ‘what is wrong now’ falling out of people’s lips. The sad thing is I am used to it, but it doesn’t make it hurt any less. I don’t expect anything less from strangers, people who don’t know me or my life, to look and make such gestures confused at what it is that is wrong with me exactly. I look ‘normal’ after all. Is it annoying? Yes, but does it surprise me? Not anymore sadly it is part and parcel of living with invisible chronic illnesses. It’s the people who do know me that react like that which are the real stingers; my family and friends.

How do you describe chronic illness to someone who doesn’t have one? You can give it a good go if needed, but ultimately its just words if you don’t experience it yourself. Throw in multiple chronic illnesses and it gets even more complicated as people start to suspect you may be some kind of hypochondriac as why it is always you that has to have everything wrong. I didn’t choose to get ill, yet I am and if not having to deal with my own emotions regarding my situation wasn’t enough I have to deal with everyone else’s too.

As much as I have struggled with the changes in my life over the years, it has been difficult for other people in my life too. Gone are the days of the workaholic professional in a well-paid job who back in my university days could be out for hours on end and not bat an eyelid. Now I am doing well if I manage to leave my house once every few days for a bit of fresh air. I have seen the changes in my life and in me as a person, so why wouldn’t anyone else notice it too?

One of the hardest things about being chronically ill – symptoms aside – is the disappointment I feel in other people around me. They don’t show it on purpose to make me feel bad, in fact I am not sure they realise they are even showing it at all, but I can feel it. The disappointment I am not the same person anymore that my life isn’t going in the direction it once was. I had such big goals in life and now my biggest achievement is having a shower every few days. I have learnt through my understanding of chronic illness that my goals now are just as important as my goals were before, but it doesn’t mean they seem important to others. They are out working, doing housework, raising babies and here I am congratulating myself over the fact I have washed my hair.

The truth is I feel at times I have to press the mute button on how I feel about my chronic illnesses to pacify others. Because whilst they support me physically I feel I have to support them emotionally when it comes to my illnesses more so than myself. I pretend I am ok that the mind-numbing fatigue in my body is not too bad, that the dizziness in my head will pass and the thumping headache will subside. Why you ask would I do that? Because if fighting the symptoms of chronic illness daily has taught me anything it is I so much stronger than anyone could imagine.

Seeing the sadness of others about my situation and at times their annoyance can stir up a mixture of emotions inside of me. Sometimes it is anger that they cant be more understanding, other times embarrassment that at the age of 32 I am still living the way I am and am so dependant on others, and on occasions hurt because I feel if the people who know me best don’t understand me then how can I get others who don’t know me at all to.

My feelings aside it has never really dawned on me however how it must be loving someone who has chronic illness. Loving someone and watching them live life with so many limitations. Whether that be your daughter, son, mother, father, brother, sister, friend or spouse, the person or people on the other side of the coin are suffering too. They don’t have a quick fix to make everything better so all they can do is be there, watch and support. They might not get it right sometimes, but do any of us? Because in the same way chronic illness patients may filter what they say to protect their loved ones, their loved ones probably do the same back.

Chronic illness doesn’t just affect me, sure I am living with the symptoms and the limitations, but it affects my friends and family too. It robs us all. It is natural whichever side of the illness you lay on to experience a cauldron of emotions in relation to the situation; it doesn’t make anyone bad people. We are all dealing with the beast that is chronic illness one way or another, so it is about becoming more understanding to each other’s needs.

Talk and listen, be honest and be considerate. Don’t take it to heart if sometimes you hear things don’t want to hear because sometimes you may say things too that are hard for others to digest. Even though talking is important so is having fun together and making time for each other that isn’t just about chronic illness. You are not your illness so it’s important at times to remind others of that too.

Remember you are not problem, your family and friends are not the problem. Chronic illness is the problem and with your loved ones by your side you can face it together and become stronger than ever before.

PLEASE NOTE – If talking to your loved ones is too hard and not an option then the use of support groups are fundamental and a great tool in hearing about other people in the same boat. This includes family, friends and carers as well as sufferers themselves. Don’t suffer alone – there are more people out there then you realise.

Activities · Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · Stress Management · UCTD

Action Plan for Seasonal Changes

15th Oct 202027th Nov 2020 memyselfandchronicillness3 Comments

Depending on your specific condition seasonal changes can make a huge difference to chronic illness both physically and mentally. Some people may even experience Seasonal Affective Disorder (SAD) which is a type of depression that is essentially affected by the seasons of the year. Before I was diagnosed with Fibromyalgia, ME/CFS and UCTD I was told I had SAD because I struggle predominately more in the autumn/winter months. I know now the reason for this was because the colder months made my conditions worse and therefore my mood lower. Although I do not have SAD as such I have found that some of the techniques I used in preparation of the colder darker months can help with chronic illness.

Preparation is key so in terms of my own experiences I am quite late as I normally feel the impact October onwards, so I would aim to start getting ready September time, but here we are mid October and I am only just beginning never mind!

Please note if you do suffer with SAD specifically then contact your doctor for more advice and information.

My first step on my action plan is to organise my winter drawer. Quite simply I select a drawer (or 2!) in my cupboard and a section in my wardrobe and fill it with my essential winter items. Items include jumpers, socks, tights, ear muffs, thermal tops and my most favourite item a bobble hat. Bigger items may include onesies, dressing gown, slipper boots, (although I wear these all year round), and hot water bottles. By having the items ready I don’t have to worry about finding them when the seasons hit and it is easier to throw things on without any debating when I am feeling not so great.

My winter drawer containing thermal vests, tights, socks, ear muffs and bobble hat

My second step is to organise myself. I do this by putting together some type of diary of course this would be helpful all year round, but I do find in the colder months my ability to stick to things wanes significantly as my symptoms affect me more. You can do this to record dates of importance, but to also plan things coming up to manage your energy levels more effectively. You can do this with a regular diary, an electronic version, or even a large wallchart/calendar. This year I have opted for an online calendar in order to plan any blogging bits I want to do which will not only help me manage my energy, but hopefully keep me motivated.

My third step is to brighten up my living space. Whilst there are many amazing things to enjoy about the autumn/winter months they can be quite dark, cold and often wet months, (in the UK anyway!), so I find it important to inject colour into my life in other ways. I do this by bringing out my colourful accessories and furnishings and things that remind me of warmer climates. Cue the orange and yellow cushions and the beach pictures!

My fourth step is to plan how I am going to get more natural light. Being chronically ill it can be difficult to get out the house at the best of times, but especially when it cold and wet. Whilst at this stage my plan is to have a short walk every few days to soak up the light the reality is that may become difficult. Other ways of dealing with this is for me to reposition my spot in the living room so I am sat next to windows, make sure my curtains are thinner to get more light in my room and to set up my sunrise/sunset alarm clock to help me with getting to sleep and waking up.

UPDATE – My sunrise clock is not working even after changing the bulb arghhh!

My fifth step is to look at the positives of the seasons. As I already mentioned the autumn/winter months have a multitude of amazing things about them, so it is important to remember it is not the seasons themselves that are the problem – it is the lack of light and warmth. The colours of autumn are beautiful and there are many things to look forward to regardless of how much energy I want to contribute to them. Events such as Halloween, Bonfire Night and my most favourite time of year Christmas – even though my body may be struggling they are great things to focus my mind on. If the winter is a real problem it may be an idea to start doing little bits for Christmas now, so it doesn’t become too overwhelming nearer the time.

So here you have it my 5 step action plan for the seasonal changes. Other things to consider are freezing meals, taking up a new indoor hobby, light therapy boxes (make sure to always do your research), eliminating stress as much as possible and the usual suspects in monitoring your diet and exercise pattern.

Remember the more you prepare now, the less pressure you will put on yourself later!