How to keep yourself busy when you have a chronic illness

When you have a chronic illness it can be hard to find things to do that won’t tire you out so much that you then have to spend a day in bed recovering. I know from experience that being so poorly that you have to spend most of your time bed/ housebound and only with occasional visits out to go to see family or doctors it can become very lonely so this post is mainly aimed at those who are bed/ housebound and are unable to get out much to do things. Anyone can start to do these crafts if you like in you spare time!

hope you’re feeling okay

CROSS STITCH

Cross stitch is something th13941125_1346297492051780_662974017_nat I only learnt how to do a few weeks ago. I went to visit my family, and my sister who’s 11 was doing it so I thought I’d try it too and I absolutely love it! At first I found it a bit difficult but once you get the hang of it it get’s so much easier. The photo of the bear is my first ever cross stitch I’ve done which I’m quite proud of, even if it’s not quite finished. I have found loads of patterns and kits that I want to do. The one I’ve just started on is a Thomas the tank engine pattern for my nephew who is 16 months old. I never thought I’d enjoy doing cross stitch but I’m hooked now! It’s great for anyone to do but for those of us with chronic illnesses it is a great craft to do because it’s relaxing and even if you only do a few stitches at a time that’s okay because it will all add up! Below is a photo of the work in progress of Thomas the tank engine for my nephew Leo.

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I have already got myself lots of kits to do, Winnie the Pooh & Tigger too😉 Others that are cards that I can cross stitch which are pretty, I have a couple of Disney bookmarks and some cute Christmas penguins to do! I honestly love it and I definitely think you should have a go, it’s great because you can do as much or as little as you want! It’s good for concentration too!

This is my ‘Thomas the tank engine’ cross stitch that I’m doing for my nephew Leo. I have only done a little part of it but it’s surprising how quickly it all adds up! I’m hoping to be able to give it to him as part of his Christmas present so hopefully I’ll be able to finish it by then!

Below I have put a couple of links to some easy beginner patterns that you can do if you want to give it a try! You can find lots more patterns on Pintrest and on other pages. All you need is the pattern, a needle, aida and the threads which are easy to buy on Ebay. You can also get mini cross stitch kits which you can buy for £2- £3 which come with all you need to get stitching!

Beginners ‘hello kitty’ cross stitch pattern 

Winnie the Pooh cross stitch pattern                                                                                                   

KNITTING

I know a lot of people think that knitting is something that only old grann13933458_1346297465385116_255109548_nies do however it’s surprising how many younger people actually do spend their time doing! I love knitting and before I entered the world of cross stitch I was in the process of knitting a bed throw for my bedroom. I have only managed to do a few squares so far but I am going to start doing alternate days, one day knitting and then another day cross stitch. I have knitted a few things before, I knitted a blanket and some tiny hats for when my nephew was born and I also have knitted my sister a blanket made up of lots of small colourful squares! I’ts so easy to find simple tutorials and patterns that you can start off doing if you’re only a beginner/ Pintrest is FAB for finding hundreds of patterns with tutorials. I’ve put a couple of links below.

The Complete Beginners Guide to Knitting 

Easy knitting patterns for beginners                                                                                                   

LETTER WRITING

One thing that I love doing is letter writing, there is nothing better than receiving a pretty letter13989665_1346297505385112_1045955597_n in the post! After going on medical leave from college letter writing has been something that has been a nice way to keep in touch with my friends as I rarely get to see them as I’m not always well enough. When I do get to see them, that’s the best! I write to my friends and also my family, especially my younger sister Martha who is 11, I do miss her and my family with being away from home. I’m lucky that I can see them any time I want as long as I’m well enough. Anyway, back to my letter writing… I have a whole big draw filled up with notelets, writing paper, cards, stickers, writing sets and even more stickers! I really love using stickers to pretty my letters in! If you get a letter through the post and it’s covered in stickers then you will instantly know that it’s from me!

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COLOURING

Colouring is a great one to do as its good for relaxation and can be very calming. It’s super easy to do and all you need is a colouring book and some crayons! I’m not the best at colouring in but even so it’s fab for something easy and not too difficult to do, even on some of your worse days. Even if it’s only 5 minutes you can manage that’s soo good, you did it and I’m proud of you! Even for those without a chronic illness it’s super great for relaxation just as much as it is for those of us who have a chronic illness. It’s easy to find colouring books either online or in specific magazines exclusive to colouring! I’ve put a couple of links below of a couple of pretty awesome colouring books I’ve found!

Colour therapy book (pens & pencils included) – £5.45

Cute elephant colouring book  – £4.95

Of course these aren’t the only activities that you can do to keep yourself busy. They are just a few things that I find are good at passing time and most importantly are low energy type activities which is always important. Even with these activities you have to make sure to do them all in moderation, too much of an activity, even colouring can drain your energy the more that you carry on doing the activity. Regular rest breaks are key to managing your energy levels the best you can.

I hope that this blog post reaches those with chronic illnesses and can give you some ideas on things you can do to keep you busy but also things that aren’t too energy consuming in moderation. Please leave me any feedback in the comment box below and don’t forget to share this post and follow my blog for more updates.

All my love and best wishes,

Meg x

9 things chronically ill people want our loved ones to know

 

1. 

Our grief is ongoing – It’s hard for us who are chronically ill because we feel like we are grieving for our old life back before we got sick. It’s hard not to look back and to think of all the things we used to do and all of the friends we had and seeing family all the time whenever we wanted. Going from doing so much to suddenly being unable to sit up in bed or unable to go to college/ work. I personally get very upset daily because it’s hard not to look back when you’re laying in bed unable to distract your mind from the replaying of the fun times I had and the things I used to do. Before I got poorly I went to college, I saw my friends regularly and spent a lot of time with my family, going on outings and holidays which I loved! I was a happy, creative, bubbly and confident person growing up. Then I got sick and am now bed/ housebound which is hard. I have a wall of photos beside my bed which makes me happy but also sad as it’s a reminder of how happy and healthy I looked. I am thankful for all of the good times I’ve had and for all of the memories I can look back on and smile. My grief is ongoing and as long as I’m sick I think it will stay with me.

 

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Me before getting really sick

2.

We think we let you down – Telling people that I “don’t feel up to it today” is really hard to do. I always worry that they think I don’t want to meet up and if I keep letting them down then I will lose them b258385d9169393c33b0e6b7bcdc358eas friends. We want more than anything to join in with you and we hope you understand. I prefer to arrange plans, where I have a day free before and after so that I can rest/recover, but this is not always practical. I only occasionally plan to meet up with people and even then I usually don’t know how I’m going to feel till the day. Having chronic illnesses is very unpredictable! It’s horrible not knowing if you will get better and  when and if you will experience any relapses. Relying on people to do most things for you and watching them get their hopes up when you accomplish a challenge and think your heading into the right direction, just for the next day to leave you completely bed ridden. You might think we are just overthinking, but it’s only because we care how our illness not only affects us but affects those around us. We are sorry if we have let you down and have had to cancel any plans that we’ve made. It’s difficult for us to make plans because we can go from good to worse in a matter of hours or days. We are living with a cruel and unpredictable illness and having your understanding is so important to us.

 

3. 

Our moods change – Living with a chronic illness which causes extreme fatigue and pain that can have a negative impact on our mood causing us to sometimes become irritable, snappy, quiet, grumpy or tearful. Everybody gets irritable or grumpy when they are tired or in pain, it’s normal to do that. For us who are chronically ill our mood can change so suddenly depending on how we are feeling or how much pain we are in. Wedb51a35a38cb1c4d0fe25aebba4ca6bb don’t have any control over our illnesses and we don’t mean to be snappy or grumpy towards you, it’s just very difficult for us to control. Living with a chronic illness which can vary constantly throughout the day is going to make anybody’s mood change drastically. We don’t mean to be like this towards our family and friends and we feel bad when we upset you or snap at you, it’s difficult enough dealing with our illness let alone having to try and control our mood at the same time. When I personally know that I’m not feeling well, I’m in pain and know I’m grumpy and tired I try my best to stay away from people to avoid snapping at my family and friends. Our mood is like a see-saw sometimes, one minute we’re up but the next we may be stuck at the bottom, tired and upset because we get so fatigued and in pain. We are sorry if we upset you, we are doing our best to control our mood to avoid upsetting our friends and family.

 

4.

We fear getting worse – Having a chronic illness that has no cure and can flare up after any activity can be quite scary and upsetting at times. It scares me that even little everyday things like eating dinner or having a bath or shower is enough to wipe me out. Luckily after a day resting I will recover from that but if I push myself too much more it can cause me to relapse and it can potentially set me back weeks or months. Being diagnosed with an incurable chronic illness can be hard to manage and you can go from bad to worse within hours. We don’t know how well we’ll be next week, month or year, we may be better but we may be worse. It’s difficult get through the day without being in fear of making ourselves more poorly. It’s difficult not knowing how our illnesses may progress. Hopefully all of us who are chronically ill will be better as time goes on but in the meantime all we need is your love and support to help those of us dealing with these things that tiny bit easier. To think back on how poorly I was this time last year I was so  confident that my illness wouldn’t get any worse and I would feel better by now but truthfully I’m 10 times worse which is scary for me and for everyone of us living with incurable pain and illness.

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5.

It’s hard communicating our feelings – When you have a chronic illness it can be very difficult to express how we are feeling physically, emotionally and mentally, especially when trying to describe a chronic illness many people haven’t even heard of before. We find it difficult to explain to people who don’t understand or believe what we are going through, even though at times we really want you to try. We can become scared to tell anyone how we really feel because we don’t want to burden you with our problems, annoy or worry you even though you want to help. It is easier for us to say ‘I’m okay” because just telling you how bad we feel can be too exhausting and make us feel mentally low, realising the harsh reality we are living in. Half the time we don’t know what’s going on with our bodies as we have so many problems/symptoms it’s hard to keep track. For some people, using other methods to express how we feel can be very helpful. I prefer communicating through song writing. I find it a good way of releasing my emotions. Music is my happy place.

 

‘Saying that you’re okay is so much easier than explaining all the reasons you’re not’

 

6.

We are confused about the future – Growing up we dream about our future, what job we’ll have, what car we’ll drive or holidays we want to go on. For us who are chronically ill we once had all of those dreams, we never planned to wake up one day and have all of them taken away from us so quickly. The future is something which can be quite scary and also very upsetting to think, not just for me but for many others suffering with incurable illnesses. It can also be very difficult for us to plan our days because we never know how we will feel which is very difficult for me. I hate making plans and not being well enough to do them because I hate letting people down. Even though I find it very daunting to think about my future I still remain hopeful that I will start to build up my strength and start rebuilding my future I have always dreamt of. At the moment I’m just taking each day as it comes, whether it’s a bad day or a good.

 

7.

We worry that our needs feel like a burden – Having to rely on friends and 1672a8e31a14019108e88267334f608dfamily to do things for us can make us who are chronically ill feel like a burden, we feel like you do far too much to help us and that we are worried of tiring you out too. I personally hate having to ask for help and I’d rather just struggle to do it on my own but when my body is too weak to stand or I need help with bathing, sitting up in bed, pushing me in my wheelchair, tiding up and things like that I have no other choice than to accept help. I have to also remember that I’m very lucky that I have people who understand and will willingly help me through anything.

 

8.

We are grateful – Having a chronic illness is very difficult to live with, it’s also just as hard for friends and family to understand and accept what’s happening as they watch us struggle with simple everyday tasks like having a bath or getting dressed. Having a chronic illness myself, I’m extremely grateful for all of the help and support that I receive, both from family, friends and my doctors. Having these people mean an awful lot to me and to have people who won’t judge me and will help me with everyday needs such as washing my hair, getting dressed and taking me to doctors appointments can help so much. I know I probably don’t say it enough but I will be forever grateful to all of the people who have ever helped me to ease a part of living with my illness. To have people who are willing to help you with such needs is such a blessing, and even though it’s hard to accept that sometimes we may need help, sometimes it’s better to just accept the help and be grateful that someone cares and loves you that much to give you that.

 

9.

We are hopeful – Having an incurable and debilitating chronic illness can be hard to know how and if we will ever get better. Even though there isn’t a cure now it doesn’t mean that there won’t be one in 5 years or 50 years time. It’s hard for us to remain hopeful sometimes and even though we may seem negative we definitely are hoping for an advance in medicine and better treatments to help our recovery. We are hopeful for so much, I will always remain hopeful for a cure for all chronic illness.

 

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I hope you have enjoyed this blog post and learnt some of the things that us with chronic illness just want you as our friends and family to know. I apologise for how long it has taken me to update my blog, I have been too unwell. Please remember to share and subscribe to my blog for updates.

 

Sending you all so much love,

 

Meg x

 

 

 

10 things not to say to someone with a chronic illness

In this blog post I will be talking about what not to say to someone who has a chronic illness. Living with multiple chronic illnesses myself I know what it’s like to be told things like ‘but you don’t look sick’ or ‘just be positive’. Even though you may mean well and are trying to help it can still upset and frustrate us when we get told these things.


1.

‘But you don’t look sick’ – This is a phrase that us with chronic illnesses hear a lot, even though we don’t look sick it doesn’t mean we’re not sick! Even though for some of us with chronic illnesses we may look fine from the outside but underneath our body is failing on us. We may be exhausted and fatigued, have sickness, dizziness, loss of temperature control, vision difficulties, muscle weakness and joint pain. I could sit here and write pages of symptoms for different illness but I’m just trying to prove the point that I you don’t have to look sick to be sick. I myself am diagnosed with an invisible illness called Fibromyalgia which causes hundreds of symptoms throughout my body every second of everyday yet I may look perfectly well from the outside. Just because us with invisible illnesses don’t look sick some of the time it doesn’t mean we aren’t sick!   The previous blog post I have written was all about this phrase ‘But you cant look sick‘ so you can check that out if you want a more detailed explanation.

 

2.

‘You need to get some exercise’ – This is a phrase that many with chronic illnesses hear a lot and is so frustrating and upsetting to hear. Being told to just go and exercise and be active can be something that is impossible for a lot of us with chronic illnesses.

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I have M.E and fibromyalgia and I know that even a small bit of exercise can leave me stuck in bed for days after and completely drained from all energy. Having exercise is yes very important for many people but it’s virtually impossible for us who are so ill. It’s not that we choose not to be active or exercise, it’s merely because our bodies are too weak and will get worse with activity and any type of exercise. Before you say ‘just get some exercise’ to someone you know has got a chronic illness please make sure you know about the condition, read up on it and then you may think before you say it again. When we are chronically ill, small things like getting dressed, showering/ bathing, going to the bathroom, being in company are huge things for us and use so much energy. It may seem to you like we don’t exercise or do many activities that you do but we are doing the best we can.


3.

‘It must be nice to stay home all day and not go to work college’ – I have been told that it must be nice to stay at home all day a few times since I’ve been poorly and I don’t think people realise what it’s really like to do that. It’s not just staying at home all day, watching tv, playing games, having friends over. It’s waking up feeling just as exhausted as you were the night before, feeling sick and nauseous most of the day along with dizziness, muscle and joint pain, and so tired that you have to sleep most of the day. It’s hospital admissions and doctors appointments. It’s not quite what everybody else thinks when they know I stay home all day. I would rather work full time or be in college and have a normal life with no sickness and pain than staying home and in bed all day. For people with chronic illnesses who are bed/ housebound like me, I know would do anything to live a normal and healthy life again. Before you say ‘ it must be nice to stay at home all day’, just think about what you’re saying and who you’re saying it to.


4.

‘Just push through it’ – When living with a chronic illness 24/7, being told to just push through it sounds so much easier than it actually is. For us with chronic illnesses, trying to push through it can make us more ill because our body isn’t physically strong enough to keep fighting it, doing it can sometimes leave us more ill and leave us stuck in bed for days, weeks and sometimes months. From personal experience, trying to push through things with M.E can make me feel really ill and it makes it very difficult to push through it at all because my body can’t cope. Fighting it will just make me more ill and will leave me in bed for days after. I’ve learn’t not to push through things but to do tasks in tiny chunks while also taking rest breaks in between to make the task more manageable.

 5.

‘It’s all in your head’ – Having a chronic illness is bad enough, without being told that your illness is all in your head. This can be very upsetting to be told that effectively your illness doesn’t exist and in fact we aren’t even ill at all. People who say this usually have absolutely no idea about our illness and how it can affect us, giving them absolutely no right to even say that. I have had this said to me a couple of times, from both friends and family. It can be so hurtful to be told this when you know that the truth is you are very poorly and it isn’t in your head at all. People who say this have absolutely no right in my opinion to even be allowed to say it until they know absolutely everything about our chronic illnesses that we are going through. Maybe then they’ll learn that it is NOT in our heads at all.a1c7544589997c961d4e35236f1637c6

6.

‘You’re taking to much medication’ – Being told that us who are chronically ill are taking too much medication, while yes it’s not good for our bodies it’s so much worse for us if we don’t take our prescribed medications. It can be impossible to function without taking them, we can be doubled up in pain and unable to move without them, that’s why it’s absolutely vital for us who do have to take medication that we take them as prescribed by our doctor. If we had the choice we would rather not have to take any medications but without them we wouldn’t be able to get out of bed, get dressed and do basic day to day tasks. The medications I take some of which are; morphine, tramadol and duloxetine are so important that I take because otherwise I get in so much pain that I can barely move or get out of bed. I think those that aren’t chronically ill don’t realise just how much pain some of our illnesses can really cause.

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7.

‘Everybody gets tired’ – While it’s true that everybody does get tired, 2eeaad8860a438304aac645a9885ed3anormal person tired is so different to the tired that us with chronic illnesses experience. When you get tired you know that if you have a sleep you will feel better however us who are chronically ill with illnesses such as M.E and Fibromyalgia can sleep and sleep but we will still wake up just as tired as before we went to sleep. Fatigue is different to being tired, it’s there when you wake up, it stays with you all day, its a lack of energy and a feeling of physical, emotionally and mentally exhausted. It never goes away.


8.

‘It can’t be that bad’ – Sometimes I wish that for those who don’t know what it’s like to experience the pain and fatigue I feel could just experience it for a day and then tell me that it can’t be that bad. I definitely think it’s true that if you haven’t experienced what someone else is going through then you won’t properly understand what it’s like until it happens to you. It’s hard to make people understand how fatigued you really feel and how much physical pain you are in when they haven’t been through it themselves. We can tell people how we feel and they can try and understand and sympathise with us or they can just tell us that ‘it can’t be that bad’ and we are just over reacting.


9.

‘You need to get out more’ – I myself suffer from Fibromyalgia and M.E and I know that trying to get out more is so much harder to do than someone who isn’t chronically ill. I have been told a lot of times that I just need to get out more, and for those that don’t understand it can be very hard to tell them that that’s nearly impossible for us sometimes because of symptoms like light and noise sensitivity and that by the time we’ve got out of bed and got dressed we are completely exhausted and have to just go straight back to bed. If we can get out for a tiny bit it may take us days and weeks of recovery time just from doing something like walking to your local park or going to the supermarket to get some shopping. When I personally feel like I’m able to leave the house I do it at my own pace and in my own time. We have to remember to pace ourselves or we will get more ill and will be less likely to get out again for a while. People don’t realise how much we have to do before we actually leave the house and how much energy it takes for us to do these things. We have to get out of bed, get dressed, take medication, have a wash, breakfast (depending on the time of day), bearing in mind after each of these things that we do will probably require taking frequent rests. Before you say ‘you need to get out more’ to someone with a chronic illness, just think about how energy consuming and how difficult it can be for us to do this. All we want is to be able to get out and do things and as soon as we feel well enough to do that then we will.

 

10. 

‘You’re just depressed’ – When having a chronic illness being told that ‘you’re just depressed’ is something that we hear many of times. We hear it from friends and family and even from medical professionals. Before I was diagnosed with fibro and M.E doctors told me I was just depressed, it wasn’t until I saw specialist doctors and was diagnosed with my chronic illnesses that meant that I wasn’t just depressed. However, by the time I was diagnosed and my health had deteriorated very quickly I had become depressed because I was in pain and nobody knew what was wrong with me. Having a chronic illness that causes extreme pain and fatigue is bound to make anyone feel low and depressed. To make things worse when I had to stop college because I was too poorly to continue made me very upset, I have missed out on so many opportunities and lost many friends who fail to understand what I’m going through making me feel more depressed. My illnesses didn’t happen because I was depressed, my depression happened because of my illnesses.

I hope that from reading this that those of you who know a friend, family and loved ones who suffer with chronic illnesses that you will learn the things that aren’t helpful for us and also the things that are encouraging to say. I will be doing a blog post about things chronically ill people want to know.

Please leave me any comments below and subscribe for email updates.

All my love,

Meg x

‘But you don’t look sick’

  JUST BECAUSE YOU DON’T LOOK SICK DOESN’T MEAN YOU’RE NOT SICK!

 

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‘But you don’t look sick’ is a phrase that many of us with chronic illnesses hear on a regular basis whether that be from friends, family or people we work with. It’s bad enough having a chronic illness, let alone having to prove that we are sick.

People can be very quick to judge those  who they have only just seen or met and this is why it makes it so easy for someone to say to someone with a chronic illness ‘but you don’t look sick’ because sometimes they are right and we don’t look sick at all but behind all of our smiles and make-up it’s a different story. For all you know you might be saying this to someone who has cancer, fibromyalgia, M.E or chronic back pain. Just because you don’t look sick doesn’t mean you’re not sick!

You can look at people with chronic pain and sickness like myself and just presume that we are a happy, healthy and active person, but if you take the time to ask us what’s wrong then the outcome can be a totally different story.

9b7f5cda513a668acce6f4a9be489d0cAsk me how I feel and I may tell you about my constant nausea and sickness and the pain that I get every second of every day along with hypersensitivity to the slightest touch. Ask me about my weight and how I’ve put on 4 stone within 10 months and how it gets me down yet I’m to poorly to exercise. Ask me about how I’ve lost friends and family because they fail to understand and how I’ve missed out on education and work. Ask me about how tired and fatigued I am and about all of the medication I have to take. Ask me how many hours I have to spend sleeping in the daytime and how some days my body gets so exhausted and I cant stand or lift my head up off my pillow. Ask me what it’s like to not be able to leave the house some days because I’m too sick or how long it takes for me to recover after going out for a couple of hours.

I can’t sit and list everything but if you want to know more or ask any questions don’t hesitate to leave a comment at the bottom of this post or send me an email.

Please remember to not judge someone only on how they look because you never know what battles some people are facing and please remember that just just because someone may not look sick doesn’t mean they’re not sick!

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Hope you have gained something from today’s blog post. I’m sorry it’s not very long, I’ve been too unwell to post. If you have any questions feel free to contact me. I hope you have a fabulous end to the weekend,

 All my love,

 Meg x

 

Surviving hospital with M.E

As most of you will know and may possibly have experienced, trips and admissions to hospital can be tough and pretty tiring on anyone. For myself and others with M.E it can be even tougher and leave us bedridden for days, weeks and sometimes months after. In this post I will be talking about my personal experiences of being in hospital and what helped me to deal with my M.E enough to survive my visit. I will talk about things that helped me to cope and things that I think are absolute necessities to take in your overnight bag.

I have been admitted to hospital three times since being diagnosed with my M.E. I suffer badly with my M.E at home let alone in a noisy and loud hospital environment. In February I was in hospital for three nights due to severe stomach pain and queried appendicitis, but luckily after blood tests and scans I was told that I just had a bad virus and I was allowed to go home and rest. My hospital stay however was made extremely difficult and so much more draining due to my M.E which got so much worse day by day as my body struggled to cope with everything going on and I struggled to function. It took me a few weeks of staying in bed and resting before my body was strong enough to deal with small activities like going and sitting in the garden for 10 mins or spending time with my family for half an hour once or twice every week. Luckily I then recovered enough to then start building myself up to how I was before I went into hospital and to be perfectly honest it was a real struggle but I did get there slowly.

When you have a chronic illness hospital stays can be such an awful experience and so exhausting on your body which is why it’s good to know what sort of things to pack in your bag if you do have to go into hospital. I hope that from experience I can give you a rough idea of what to take in your bag if you do need to stay overnight, (although I really hope you won’t have to deal with the stress of staying in hospital)!


Below are items that I take in my bag and have found helpful to have when staying in hospital, I have highlighted in pink selected items I feel are the necessities you need for a hospital stay . – Feel free to add any extra items that I haven’t mentioned in the comments below.

PYJAMAS are a must have, those hospital gowns they give you are mega uncomfortable and revealing so make sure you remember to pack a couple of pairs! I also like to take my EYE MASK and EARPLUGS so that if its to noisy I can just put them in and when I get light sensitive or need to sleep in the day an eye mask is a fab idea to block out all of the light.

I also definitely recommend taking a nice WARM BLANKET that you can wrap up in if you find hospital blankets to thin. I also take a FAVOURITE TEDDY, it is important that you make yourself as comfortable as you can because it’s not the same laying in a hospital bed compared to your bed at home.



A MUST have for all of you, however more so with us suffering with chronic illnesses is to remember to take ALL OF OUR MEDICATION we are taking because from personal experience I forgot to take mine one time and the hospital had a shortage one of my medications which meant that I missed a few doses before my family bought me mine from home.



As some of you may know and for those who don’t hospital can be very boring and get pretty lonely, (unless you make friends with the person in the bed next to you). I always make sure to get together a few bits and pieces that will keep me occupied in between having tests and seeing doctors. I love to take a COLOURING BOOK AND CRAYONS, it can be very therapeutic or sometimes I might want to take my KNITTING or my favourite thing to do is WRITING LETTERS, I love keeping in touch with everyone and who doesn’t love getting a hand written letter in the post!?

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It’s also a good idea if you pack NECESSITY ITEMS like UNDERWEAR, a TOWEL for a bath or shower (plus SHAMPOO AND CONDITIONER), BODY WASH, a FLANNEL and a little bit gross but something that I class as a necessity item is my SICK BOWL (I take it most places I go, just in case) but also because I really hate those brown cardboard bowls they give you in hospital! I sometimes take my HOT WATER BOTTLE which you can ask the nurses on the ward to do for you as well.



I hope that this post has been helpful and I hope you don’t but if you do have to stay in hospital then I hope you will remember some of these key items to make your stay more comfortable and bearable. The chances are your M.E will probably flare up and leave you quite poorly because going into hospital is a strain on anybody let alone someone with M.E. This post is just giving my opinion what you should take and the things that I think might help your M.E and even for those with other chronic illnesses. The earplugs and eye mask are the best things that I take, especially as I am quite sensitive to light and noise.

I hope that you have enjoyed this post and I’m sorry if I’ve missed anything out so please do leave a comment below and please don’t forget to subscribe and keep up to date with my blog posts.

All my love,

Meg x

Grieving your life before getting sick

Grief is a feeling of immense sadness and loss. It is a part of life that many people have to endure when a love one passes or lose something increasingly significant to them, however in my case I’m talking about a grief that I know a lot of people with chronic illness and sickness have experienced at some point in their journey. I’m talking about the grief that comes with being chronically ill and grieving the life that we had before getting sick. Wishing we could have our life back before we got ill and wishing we were the person before. Remembering all of our friends and family that we used to have and used to go out socialising with and enjoy outings and gatherings. Then there was the time when we became sick and those things we used to do just become memories as we lose those friends and in many cases family members who just don’t understand and no longer want to be around us now that we are sick. That is something that deeply saddens me that they didn’t stick by me through my suffering when I would do the same for them. You learn very quickly who are your true friends and family and who is prepared to stick by you through anything. Just because we’re sick doesn’t mean we can’t be happy and still enjoy things.

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No matter how hard it is you have to remember to keep going and put one foot in front of another and keep on fighting.

I have times often where I will just sit and cry as I look at the photos I have on my wall next to my bed and remember how I used to be and who were my friends and now aren’t. It saddens me to see how happy and healthy I used to be compared with how exhausted and run down I look now. The things that I used to do, holidays I used to go on and looking back at photos where I had all the energy I needed to do the things I want and see all of the people I wanted to see.

Since getting poorly I have had to give up so much including going out with friends, seeing family and I’ve even had to give up college which for me does make me very upset, especially as I watch my friends do so well and get the grades that all I wish to get too. My first year at college I did so well and got a distinction* which I was so proud of! It just upsets me that I couldn’t do my second year and finish my course to get a full qualification. I’ve found that trying to get past some of the grief that I’m experiencing is to find little things that I am passionate about and see people who I love, even if it does mean that I can only spend half an hour doing those things.

I can say that through all of this grief and the loss of so many things there have been good and positive things that has come from getting sick. I’ve made lifelong friends who also experience things similar to me and go through the same physical pain and sickness that I do, people who truly do understand what you’re going through and you have those people to talk to and cry with who won’t judge you and really do understand. I’ve taken up piano lessons and I have a half an hour lesson most weeks which I LOVE! Music is something that I’ve always been passionate about and wanted to pursue and even though I cant do my second year at college this year I still have something which learning will benefit me massively if/when I go back to do my second year.

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I love my piano lessons!

Sometimes I get so caught up crying and pleading for my old life back and it becomes difficult to notice any positives but despite this I have to constantly remind myself that I wouldn’t be where I am today without my struggle. My pain and suffering has shaped me into the better person that I am today.

“I LOVE THE PERSON I’VE BECOME BECAUSE I FOUGHT TO BECOME HER” – KACI DIANE

You can’t change your past but you can change your future. Remember that you are in charge of your life. You may be sick and unable to do what you used to but it’s about adapting to find things that you can do now. Build new dreams and hopes for your future. Life is all about the ups and downs and it’s okay for us to sit and cry for a while, just as long as we don’t get stuck there. We have to keep ourselves moving forward.

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I hope you’re all having a good day. Remember to subscribe and leave me any comments below.

All my love,

Meg x

The Importance of self love

“When the sun shines everybody smiles”

LOVE YOURSELF FIRST

 

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When you live with a debilitating chronic illness it is so important that you spend some time focusing on yourself and choosing to do tiny things that makes you feel that little bit brighter. We can often get caught up in our daily lives and get so consumed by our illnesses that we just don’t take time to sit back and do something that makes us feel just that tiny bit better about ourselves. Sometimes you have to be selfish and just tell your loved ones/ friends/ family that you need some time for yourself and indulge yourself in an activity that you will benefit from. It could be that you sit and do your hair all nice, paint your nails, put on your make-up, getting dressed, so many things that at the end of the day you can say ‘yes I stayed home all day, had a sleep on the sofa, had to cook dinner for when the kids come home from school but you can also say that what I have done is taken time to myself to do something that has boosted my self esteem and made me feel more confident about myself’.  If it means putting on your make-up when you still have your pyjamas on that’s totally okay, as long as you do something that makes you feel better – that’s all that matters! They say that self love is the best medicine!

“The real difficulty is to overcome how you think about yourself” – Maya Angelou

I know that I personally find it very difficult to love myself and since being diagnosed with multiple chronic illnesses it has become so much harder to come to the realisation that this is how my life is at the moment and could be for many years to come. This makes it even more important to love yourself more, take time to do the things you love and do things that will make you feel more happy and confident in yourself. I know how hard this may sound and I definitely find it something extremely difficult to do myself but every day you need to put yourself at the top of your to-do list because you are the most important and you deserve the very best! Remember that it’s okay to rest, you are doing the best you can.


Different ways we can practice self love in our everyday

Say ‘no’ when you need to. – Something that I myself and I’m sure many others find very difficult to do but sometimes you have to be selfish and just take a step back and think about yourself.

Don’t compare yourself to others –  I know that living with a chronic illness it’s very easy to compare yourself to those who are healthy and another one which is difficult is comparing yourself to how you were before becoming ill.

Be honest with yourself 

Take good care of your body

Ask for help when you need it –  I know that asking for help is something that we all struggle with. Asking for help is in no way admitting defeat, it is saying that today I may just need a tiny bit of help to get me through the day. It is in no way saying that you may not be able to do it tomorrow.

Pamper yourself – It is definitely okay to pamper yourself every so often, whether that’s painting your nails, putting on your make-up, going for a massage or to go and have your hair done. Something that will make you feel better and more confident about yourself.

Fall in love with yourself

Let go of what you can’t control

Let yourself rest – When you live with a chronic illness it is so very important to let yourself rest. We all know too well that without rest we will make ourselves more sick, we have to remember that we can’t do everything that a healthy person can do so make sure to take as many rests as you need.

Don’t look back on the person you used to be – I know it can be easy to look back on the person you used to be before you got sick and to think about all of the things you used to be able to do and all of the time you used to spend socialising with your friends and family but you also have to remember that we are not that person anymore and we have to focus on what’s ahead of us, and not behind.

Hope you are all out enjoying the sun, and please remember use self care in your everyday.

All my love,

Meg xox

The harsh reality of living with M.E 

My personal account of living with M.E and how it has changed my life completely.

I got diagnosed with ME in June last year after suffering with it for nearly two years  prior to being diagnosed. I have also been diagnosed with Fibromyalgia which is another chronic illness that is also seen a lot in other people with ME.

Before I got ill I was a happy and energetic normal teenager who loved spending time with friends and family. I enjoyed school/ college and studied hard for my exams.

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Me before getting really sick

Since getting ME it has totally turned my world upside down and I am no longer able to enjoy the things I used to, I barely see family and don’t see my friends often, even if I do it can only be for short periods at a time. I have become distant from what were my close friends as I can no longer be social and go out shopping and have a good time with them like I used to. It’s hard for family and friends to understand what I’m going through unless they have experienced it themselves. Unfortunately M.E is still very unknown to the majority of many people and also the doctors meaning there is not much awareness for this debilitating illness.

I have a specialist who I see every couple of months who is helping me to move forward. I have to rest lots and remember to pace myself so that I don’t overdo it and leave myself bedridden and housebound for days, weeks and in some cases it can set you back months.

I have been forced to leave education because I am physically to sick to go. I cannot concentrate or focus on anything and being in company whether that’s with one person or more it can drain my energy so so quickly and it leaves me unable to function. I have missed out on my education, spending time with friends and going on outings and holidays.

I spend most of my days in bed as I am physically to exhausted and fatigued to get up. I have no energy and my body feels weak and very heavy like I’m being held down by weights. My body can be so heavy that I can’t sit up in bed and my head feels like a bowling ball and I find it hard to lift it off my pillow. It can make walking difficult and some days my body is too weak to hold up my body weight leaving me unable to walk and get out of bed. Just walking to the bathroom can leave me exhausted and having to rest or sleep after. When I go out of the house to go to the supermarket or just into town I am mostly always forced to use a wheelchair as I physically am so drained of energy and severely exhausted.

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Southwold beach, April 2016

I also suffer with light and noise sensitivity that some days I stay in bed with the curtains shut all day and when I’m in an environment with to much noise or multiple people talking I am forced to put my earplugs in to reduce the noise. If I am talking to someone and there are people talking in the background or the television is on I struggle to focus and hear what is being said to me and the noise all gets too much for me to handle. I get brain fog nearly constantly, leaving me unable to think and unable to speak properly and my words can come out all jumbled and don’t make sense.

I have episodes of fainting which is brought on when I have done too much and my body gets so exhausted it just gives up causing me to faint. I am also sick lots due to over activity. I feel dizzy and light headed during and after activity. I also suffer with motion sickness and sometimes I can’t even watch television. I still am unable to read a magazine or book properly due to lack of concentration and focus.

Another part of having M.E, also alongside Fibromyalgia is the pain. I get a lot of pain which can be throughout the whole of my body, mostly due to over activity however it can just come on and leave me crippled over in pain. I get a lot of hypersensitivity which means even the slightest touch can cause me pain. I have had constant hypersensitivity in both of my legs for a few months now which means even my pyjamas and bed sheets can hurt on a bad day. I also get a lot of headaches which can be caused from the light and noise sensitivity. Because I also have Fibromyalgia I have tender pressure points accross most of my body, my worst points are my shoulders, back and hips which can make walking very painful. I get a lot of muscle spasms and twitches which can become very irritating. I have strong painkillers that help to keep my pain under control most of the time. I also use heat and a TENS machine to help relax and reduce my pain.

I am very lucky that I have a very supportive network of friends and family. I have met a few people through social media which gives you the chance to speak to others who experience and know what you are going through physically and emotionally. It can be a real encouragement to know that you also have that extra bit of support. I am extremely blessed that my boyfriend has also got M.E although he has recovered enough to work 5/6 days a week which is good, although he does have tired days too. He looks after me well and I am so grateful for what he has and is doing to help me, along with his amazing family. One of my best friends also suffers from M.E so we have a lot in common and can give each other the love and support we both need.

Having M.E has also caused me to become mildly depressed and suffer with low mood. I feel useless and feel like I don’t have much self worth some days. I have put on weight due to the fact I am unable to be as active as I used to be and my medication can also cause weight gain. In the last 8 months I have put on nearly 4 stone which has knocked my self confidence. It’s hard to watch your friends and family do all of the things you only wish to do. I often look back on the time when I was happy and healthy which makes me feel very sad. I try my best to remain as positive as I can.

Living with M.E is not easy to say the least. I wouldn’t wish it on anybody and I just hope that there will soon be a cure that will reduce the suffering for me and everybody else with this cruel and debilitating illness.

 

 

MAY 12TH – International ME awareness day

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Hello, hope you are all okay and have been enjoying the sunshine! I apologize now, I was supposed to post this a few days ago but I’ve been quite poorly and have only just managed to do it, sorry!

 

For those of you who don’t know today, (May 12th) is international ME awareness day. May is also the awareness month for all invisible illnesses which I will talk about a little bit later in this post..



WHY IS INTERNATIONAL ME AWARENESS DAY SOO IMPORTANT?


This is very important to me because I have ME and we need to make people more aware about how horrible and debilitating this illness is. ME suffers from all around the world and their families and friends have been dedicating a lot of their time to fundraise, support, advocate and raise awareness of this cruel illness.

Last summer I raised money for the ME Association by hosting a worldwide pyjama party for everyone who could get involved. It was just a simple idea where all you had to do was wear your pyjamas for the day to help me raise money and awareness for ME. The total came to £145, not including separate donations from bigger organisations.

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Me and my fabulous helpers raising money and awareness for the ME Association.

If you are unsure about what ME is and how it can turn your whole world upside down then I already have a blog post ‘ What is ME/CFS?‘ where you can learn all about it just by just clicking on the link.

As I said at the start of my post I would explain a bit more about other invisible illnesses, remembering that the whole of May is international awareness month.

 

WHAT ARE INVISIBLE ILLNESSES? 

“BUT YOU LOOK SO GOOD”

Invisible illnesses are ones where you may look fine on the outside but the truth is you cannot see the suffering that they are going through. What might be easy for you to do can be very exhausting and cause a lot of pain for somebody else. Below are some examples of only a few invisible illnesses.

M.E, FIBROMYALGIA, EDS, DEPRESSION, CANCER, HMS, LUPUS, ARTHRITIS, MS, DIABETES, IBS, LIME DISEASE, ALZHEIMERS, DEMENTIA – AND MANY MORE.

 

I hope that you now understand more about why raising awareness is so important to us sufferers. There will be a lot of blog posts from other sufferers about international ME awareness day and May being the international awareness months for all other invisible/chronic illnesses if you want to check those out too.

Sorry my post isn’t detailed as much as I hoped but I hope you have all learn’t something about how important awareness is. I will be doing loads more posts about my life living with ME (and Fibromyalgia) if you want to subscribe for email updates.

Happy ME awareness day!

All my love,

Meg xox

starting piano lessons

 

As a lot of you know I have a huge passion for music. Music is an amazing way of expressing our thoughts and feelings most commonly interpreted through lyric writing. I myself am a Singer/ Songwriter but I also have a drive to learn more about the music industry and to build up my confidence as a musician.

Over the last 10-12 years I have had much involvement with music and learnt various instruments including the recorder (not by choice), piano, flute, and guitar. I also took GCSE music and continued further to do a level 3 Music Performance course (equivalent to 4 A-levels) at Access to Music. I was very happy to get a distinction* at the end of my first year despite struggling a lot with my health as it started to interfere with my studies. I started my second year in September 2015 but unfortunately after only two weeks into the term my health started to deteriorate even more to the stage I was told by medical professionals that I needed to leave education as I was too poorly to continue. This has lead to me deferring a year in hope that I can return in September 2016.

Through illness and struggle I decided I wanted to carry on my music in any way that I could so about a month ago I had my first piano lesson, and I absolutely LOVED it! I have an amazing teacher and he is only just a 2 minute drive up the road which is perfect for me which means I don’t get too fatigued before I even get there. Although I have only had 3 lessons so far I am learning quickly and my teacher seems to be pretty impressed with what I have learnt so far which is good and gives me that extra bit of confidence to push myself that tiny bit further. My teacher is lovely and very understanding of my illnesses which really helps me. I am only able to tolerate a half an hour lesson every two weeks at the moment but it’s so good for me to get out and just focus on my music for a tiny bit. I am so excited to learn more and can’t wait until I can build up my stamina to hopefully have a half an hour lesson every week.

I have bought myself a lovely new Yamaha keyboard to practice on which is great because I can play from my bed without tiring myself out more by getting up and going in another room. Hopefully as I regain some of my strength I will be able to do that but at the moment playing from my bed works best. I try to do 10 minutes practice every day even if I have to do 5 minutes in the morning and 5 in the afternoon as long as I am able to do that I know that I have accomplished my goal.

13059729_1269256026422594_222738504_nAt the moment It’s hard to concentrate and remember what I’m playing and a lot of the music terminology that I once knew despite having excellent knowledge of this before I got very sick. I am trying really hard to learn and thrive in my piano playing and I’m so excited to learn more and hopefully do really well and be able to do my grades!

I will keep you all posted and up to date with how I’m getting on with my lessons and what sort of things I am learning. This is what I am working on at the moment.

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I feel so lucky to be able to learn piano and I am so excited about learning more and more and expand my knowledge in this instrument!

Hope you’re all having a fab Thursday and will continue to keep up to date with my blog. Feel free to comment below and I’ll do my best to answer as soon as I can.

All my love,

Meg

xxxxx