To those who tell me that I’m lucky I get to stay in bed all day

Has anyone ever said to you that “you’re lucky that you get to spend all day in bed” or “I’d love to get to stay in bed all day and not go to work”?

For a lot of us with chronic illnesses this is a phrase we have heard many times. The
majority of people who don’t suffer or know anyone with a chronic illness has the idea that spending all day, everyday in bed is a dream come true and it’s just watching Netflix, eating junk food, reading books, catching up on social media and lounging around.

This couldn’t be more far from the truth. I barely have the energy most days to sit around watching Netflix or catching up on social media. My concentration has become soo bad that I can barely read more than a Facebook message, let alone a book.

Some phrases and words that get said to those of us who are chronically ill can carry soo much more weight to them than you could even imagine. Phrases like ‘you’re soo lucky you get to spend all day in bed’ or you’re lucky you don’t have to go to school/work’ can be hurtful to us and can make us feel like we are choosing to live like this and that it’s our fault which isn’t true. We don’t have a choice.

I can’t control my illnesses, trust me I’ve tried. If I could don’t you think I’d be better by now.

If I had a choice I would much rather not be battling such severe fatigue that some days my body is too exhausted to even hold up my body weight to stand or fighting against the crippling pain which makes it hard to even move some days. I’d rather not have to take the copious amounts of medication just to help me function and to make my pain more bearable or that I have to use a wheelchair when I leave the house because my body is in too much pain and too exhausted to go further than 100 meters.

If I had the choice I’d be in college or at uni and have a part time/ weekend job if my course allowed, I’d go out socialising with my friends who I haven’t seen for months on end, I’d see my family more and go on days out/ holidays with them, but unfortunately my body does not physically allow that, it simply isn’t possible for me right now.

Staying in bed each day is not a break or a chance to binge on Netflix shows and eat what you like. It’s not nice to be laying in bed each day wishing about all of the things that you could be doing and watching your friends go out without you. It’s not a choice for those of us who are chronically ill.

I’ll admit that before I got chronically ill and I was sick one day and had to have the day off school that yes, a day in bed was nice, but when it becomes everyday and you can’t participate in normal everyday life and instead you’re laying in bed feeling too unwell to even open your eyes then it get’s extremely isolating, and lonely some days.

Hopefully one day I’ll be able to go back to studying or having a job, maybe I’ll be able to participate in normal everyday activities but at the moment I can’t and my job right now is to look after myself.

4be0330d8569da6bc61992fed692dcce

Looking after myself doesn’t just mean making sure I eat and drink, it means remembering to take my medication, that without I would not be able to manage, it’s making sure I make it to hospital/ doctors appointments and that I get enough rest. I have a special routine I have to follow each day that’s been specifically designed for me by my specialist. It’s soo much more than people can far imagine.

Some people just don’t understand that when you have a debilitating chronic illness, looking after yourself really is a full time job!

Next time you think about saying how lucky we are to stay in bed all day, remember that it’s soo much more than that.

..

Sending all my love,

Meg x

Receiving my SmileforME package 

smile-for-me

A few weeks ago I had a package arrive in the post. I had no idea who it was from and it was all wrapped in pretty paper. When I opened it and found out that my friends Laura and Rachel had nominated me for a smile I was over the moon! I had heard about SmileforME through Instagram and twitter so I knew what they were all about.

My gifts were wrapped in pretty blue spotty paper and all wrapped in ribbon! The gifts that I received were all soo thoughtful and personalised to me.

..

         

          …

Receiving my smile package didn’t only make me smile for the rest of that week but it also made me cry to know that there are people out there trying to bring happiness and joy to those of us who suffer from this debilitating illness. I can’t thank the two girls who run this charity enough for all of their hard work and commitment they have towards this fantastic charity even though they are both suffers from this awful illness.

I urge you all to go and check out their website, if you know one of your friends or family suffering from ME then why don’t you nominate them for a smile! There is a link below where you can also donate and fundraise for this amazing charity.

http://www.smileforme.org.uk/donatefundraise/


What is SmileforME? 

SmileforME is a registered charity for those who suffer from M.E (Myalgic Encephalomyelitis). It was founded by two teenagers who also suffer from this illness. The aim of the charity is to make people smile by sending out personalised presents to those with M.E and to also raise awareness and understanding for Myalgic Encephalomyelitis. Living with M.E can cause suffers to become lonely and isolated which is why the charity SmileforME tries their best to alleviate the negative effects by sending out ‘smile treats’ and going the extra mile to make suffers smile and to make their lives a bit brighter. It shows that someone is thinking about them through a tough time and to show that people really do care, when you are unable to leave your bed or house for sometimes months and sometimes years at a time getting a package in the post can really give you a boost and give you a reason to smile.

To nominate someone for a personalised smile treat you need to fill out the nomination form which I have put the link to below.

http://www.smileforme.org.uk/nominate/


I have also put a link to the SmileforME website where you can find out more about what they do.

http://www.smileforme.org.uk/

I hope you have enjoyed this blog post, please subscribe for more updates!

All my love,

Meg x

New Year’s resolutions for 2017

Hello 2017!

I hope you’ve all had a fab Christmas and a great start to the New Year! For my first blog post of 2017 I have put together a blog post of my New years resolutions for 2017. Some of these are related to my life living with multiple chronic illnesses and my goals for the year ahead.

8a310cfa4dae862503baa8c58ef8b5db


My Personal New Years Resolutions and Goals for 2017


– Try to read a tiny bit each day even if all I can manage is a couple of sentences. (Since becoming ill I have struggled with     reading due to my poor concentration/ focus and memory problems). I have ordered myself an e-reader so I can’t wait for it to arrive so I can download some books to start reading!

– Still on the topics of reading and books I was recommended by a friend to read a book called ‘Yoga, My bed and M.E’. It’s a book written by someone who has M.E and has put together a book of yoga friendly poses and how it’s helped her cope with her illness. I have decided that this is something that I would like to try so I’m excited to start that! (I have added a link below to the book if any of you are interested and also a link to her website).

http://www.donnayogagirl.com/

https://www.amazon.co.uk/Yoga-Bed-M-E-Donna-Owens/dp/1537220462


– As many of you know I am a singer / songwriter and musician and since becoming ill I struggled to keep up with my musical abilities so I took up piano lessons again which I absolutely LOVE! Unfortunately the last few months I have been too unwell to have any lessons but I want to try and make it my goal to have at least one piano lesson every month. I do think it’s important though that if I am not well enough then my health has to come first.

13059729_1269256026422594_222738504_n

I love my piano lessons!

–  Learn to say ‘No’ and not feel pressured into doing anything that I’m not well enough to do. (I am the type of person who hates to let people down and will cave under pressure which is something I need to change as I have been caving into it soo much recently that my health has declined and it’s not fair for me to go through that but also unfair for those who have to look after me when I can’t do everyday tasks). I know this one is going to be very hard for me to do but my health is more important and it will mean if I rest now in the future I will be able to do more.

– Not feel guilty. This ties in with the last point in the sense that when I do say ‘No’ that I can’t do something I need to learn to not feel guilty for doing so. I cannot help that I’m ill and have to cancel plans. I am simply doing what’s best for me and my health.

– Have patience with myself, my illness and my symptoms. – This is a hard one, I’m not the most patient person in the world however I have had to learn to become more patient since getting ill. Having illnesses like M.E and Fibromyalgia they can be very unpredictable, you don’t know how you will feel from day to day and it’s hard to keep your patience when you find yourself having more bad days than good. Recovery for M.E is a slow process and it’s important I keep my patience even when things are going slowly and I’m struggling with my illness and symptoms.

– To allow myself to rest during an off day instead of worrying about all the things I ‘should do’ – I sometimes spend the time I’m resting worrying and getting stressed about the things that I could/ should be doing such as tidying up or visiting my family. Getting worried and stressed about it however means that I’m not actually allowing myself to get proper rest as my mind is very active. Stress can also have a negative impact on M.E and cause a worsening of symptoms. My New Years resolution this year is to let myself rest properly and not worry about the things I could/ should be doing. I have to think, if I can’t do something then I can’t do it and it will have to wait until I am physically able to.

4be0330d8569da6bc61992fed692dcce

 –  To try not to beat myself up when I can’t accomplish or do things that healthy people do. –   This is a hard one for me as I get very easily frustrated when I’m unable to do the things I want to do. My mind wants to do it but my body is just physically unable. I have to remember that it’s okay that I can’t do everything that healthy people do simply because I’m not healthy.

– Do less online shopping!! This is probably going to be one of my hardest resolutions aha. I am awful for doing huge amounts of online shopping! I am determined to save, save, save this year though so it will mainly be online shopping but without the buying part for me this year!

– Spend more time with my family. – This one is the most important to me, life is short and the time you have should be spent with your family. I’ve put this as a new years resolution because I’ve had my ups and downs over the last year with my family and after moving out of home 18 months ago I haven’t seen my family much at all and I miss them, a lot! My family means the world to me and I’m determined to make this a year filled with lots of happy memories.

15219661_1444456905569171_7350473343064615027_n

While making New Years resolutions can be a great way to try and change certain aspects in your life it’s also very important I think to not get too focused and sucked in as it can be hard (especially for those of us with chronic illnesses that can’t control how our illness affects us), because failure to accomplish these things can have a negative impact on our state of mind and can cause feelings of not being good enough and feeling like you’ve completely failed yourself. Let me assure you that the fact you tried to do these things is the most important thing! You set yourself goals and you tried your best to do them! Remember you have 365 days this year but you also will have another 365 next year to try again. You also don’t have to wait for the new year to set yourself resolutions, you can set them any day you like! Trust me, you deserve a gold medal just for having the determination to try these things!

I hope that 2017 brings you all health, love and happiness!

All my love and best wishes for the year ahead,

Meg x

Loss of independence, life with a chronic illness 

When you live with a chronic illness there are things that you become dependent on other people for, things that you used to be able to do but because you’re not very well you can’t do that any more. For me personally there are a lot of things that I used to be able to do which I do now rely on people for. I do have days when actually I can do things myself but on my bad days there are a lot of things that I will need help with and it’s the same for loads of other people with chronic illnesses.

You totally lose your independence as a human being, it’s like when you are baby you don’t have any independence you’re totally reliant on your parents for everything. I’m not saying it’s exactly the same but when you get a chronic illness it’s like you’re repeating that whole stage again and everything that you have learnt you suddenly can’t do any more and you again have to become reliant on your friends and family for things.

As some of you know I suffer with M.E and fibromyalgia which both can cause very debilitating symptoms and some days leave me completely bedbound and 90% of the time I am housebound because I am not well enough to go out and do things like other people my age. When I have to have help with things I feel like a burden and I get frustrated with myself because I physically can’t do the task I’m trying to do, whether that’s because I’m completely exhausted or in too much pain. I feel like if I accept help, that I am admitting defeat, people tell me that that’s not true but for me that is something that I am still working to overcome.

There are a lot of things I’ve lost my independence with and the ones I’ve mentioned are only a few of those things which I now rely on other people to help me with. Only last night I had to get my boyfriend to cut my dinner up for me because my arms were too weak and felt like they were being held down by weights. I have even had to be fed a few times when I get very bad, I find it all very embarrassing and humiliating. I’m very lucky to be around people who really understand and will help me regardless and I know for others with chronic illnesses this is the hard bit actually getting them to understand that you do need help. I have to have my hair washed because my arms feel so heavy that I can’t lift them above my head for more than a couple of seconds because it tires me out soo much. When I go out of the house I have to use a wheelchair a lot of the time because I’m too exhausted to walk which means someone has to push me because I can’t do it myself. A lot of the time I do feel like a burden and that other people shouldn’t have to help me because I should be able to do it myself but I can’t because I live with multiple chronic illnesses which makes things very difficult. It took me a long while to even accept that sometimes I do need help with things but most of the time people really do want to help you and we shouldn’t be afraid of asking for a little bit of help. We have to allow ourselves to accept the help from those who offer. It’s hard, trust me I know from experience but it will make it easier for those of us living with a chronic illness, we can’t help the fact that our illnesses cause us debilitating symptoms and have a huge impact on our lives.

I’ve been chronically ill for about 3 years now and I’m still learning each day, I still am learning to know my limits. I still have times where I push myself way beyond my limits and it’s hard because all I want to do is keep up with my friends and family and be independent for my age. Growing up I always took my health and independence for granted, I never really thought about it until I fell ill and now all that I took for granted has been taken from me.

It’s been very hard for me to write this post but I hope that by doing so even if it only helps a few people with chronic illnesses feel less alone with this and that actually it’s okay for us to ask for help when we need it. Why should we be made to struggle more than we already are.

Remember it’s okay to ask for help when you need it. My email is under my contact details if any of you reading this want to reach out for a bit of support.

Feel free to leave any comments below and subscribe to my email updates.
All my love,

Meg x

How to survive Christmas with a chronic illness 

With Christmas coming up I’ve decided to do a blog post about surviving Christmas when you have a chronic illness. It can be difficult just getting through each day without the stress of Christmas and worrying about spending time with family and how exhausted we are going to get. Although this time is a very special time of the year and it’s about spending time with our family, when you have a chronic illness it makes it very difficult to be able to deal with everything that is going on in our surroundings, being around lots of people can be extremely tiring and the noise can really affect us.

I get very anxious when it comes to Christmas, I get very stressed about worrying if I’m going to get all of my Christmas cards written or if I’m going to get all of the Christmas presents wrapped in time and then there’s the worry that I won’t be well enough to enjoy Christmas properly. I myself struggle with even having a friend over for half an hour, it leaves me completely flat out exhausted. To manage things I try and prioritise the things that need doing and make myself a list so that when I complete something I can take it off and not have to worry about it any more and know that it will be ready in time for Christmas and everything will be done. All I then have to focus on is getting through Christmas and making sure that I rest lots and I look after myself to be able to have a really good time with my friends and family.

I try to do my Christmas shopping throughout the year so that I don’t have to worry as much in the run up to Christmas. One thing I have already done in preparation for Christmas, even though it was the middle of November when I started I have nearly written all of my Christmas cards, I can only write three or four at a time so it’s important that I start early so that I can send them off around the middle of December. That gives me about a month to get them written. I have also started to wrap a couple of Christmas presents every few days when I feel well enough. I find that I get exhausted after just wrapping one present so it’s important that I start early but also when I start to feel worn out I have to stop because otherwise I will be unable to do anything for the rest of that day/ the one or two following because I will have overdone it and my body will hate me for it. Today is one of those days, I wrapped a few too many presents and consequently I slept for the next 6 hours following, I now don’t feel well and I know that tomorrow I’m going to really be paying for it. You have to remember to pace yourself and do things in tiny steps. I know that it can be hard though when all you want to do is get it all done and out the way. Remember it’s okay to ask for help.

In terms of getting through all of the Christmas festivities, the family gatherings, meeting with friends and then Christmas Day I have done a list of things to help you to get through these below. It can be incredibly hard for those of us with chronic illnesses to be able to manage getting through these things which is why it’s important to do all that we can to not let ourselves flare up too much so that we can enjoy Christmas, and the special time spent with our family.




6 tips on helping you get through Christmas when you have a chronic illness

1.

Start early

It’s hard for us with chronic illnesses to do things as fast as others who aren’t ill which means that starting things early is really important. Getting your cards written, even if you can only write 3 or 4 a day, the same with wrapping your presents will mean that you are more likely to get everything done on time. I started to write my cards in the middle of November just to give me some extra time to get them done. Remember if you need to, ask for help.

 
2.

Take frequent rest breaks! 

It’s incredibly important to take rest breaks when you start to get worn out and tired or if your pain gets bad because otherwise we end up overdoing it which means we are likely to have to spend a couple of days in bed as payback for pushing our bodies too hard and that’s the last thing we want! Just make sure you have a room in your home or wherever you are staying that is quiet and you can just go to relax and recharge a bit. Being around lots of people can be incredibly draining. If you have to have a little nap then nap. You have to listen to your body.

3.

The 3 P’s – Plan, Pace and Prioritise 

The 3 P’s, Plan, Pace and prioritise. Planning is important so that we know what we will be expected to do, some days will be harder than others so pacing is also very important. Take frequent rest breaks and do things only at your own pace, you don’t want to use up all of your energy in the first 10 mins and then end up spending the rest of the day in bed. Living with a chronic illness makes it impossible to be able to do everything that our friends and family without illness can do. We have to prioritise what things are most important to us and the activities that we definitely want to do because we have to accept that we can’t do everything. For me I have been invited out for lunch on Christmas Eve which is lovely and I’d love to go but I know that if I go I will probably spend the majority of Christmas Day in bed which I don’t want. I have had to say that I can’t go because I’d rather enjoy Christmas Day more and not feel really poorly because I went out on Christmas Eve. I will still have to make sure that I pace myself and rest on Christmas Day too.

4.

Accept your limitations 

Understanding your limitations is really important, if you push yourself more than you can handle then you will make things much harder to deal with. I know how hard it is to accept that you can only do little things at a time but for those of us with chronic illnesses we have to accept that it’s all we can do. Pushing ourselves will just set us back more. Remember we can only do our best.

5.

Ask for help

Remember that asking for help is okay. Don’t be afraid about asking because most of the time people will understand and will want to help you. We can’t help it that we can’t do everything we want to do all the time. I know asking for help can be hard sometimes  but we have to think about ourselves and if something is going to be too much for us to do then that’s where we should stop and just ask for a bit of help. It’s going to be better in the long run as we will have conserved that tiny bit more energy and will have made life a whole lot easier for ourselves. You should never feel ashamed for asking for help.

6.

Enjoy yourself 

Lastly, just embrace the moment and enjoy yourself! Find the good in everyday, spend time with your friends and family and just do things at your own pace. Christmas only comes once a year so just have fun! I know it can be daunting and hard when you have a chronic illness but there’s always something to be thankful for, even if it’s just being around your friends and family. Just do what you have to do and remember to pace and look after yourself.


                                                     


Everyone has their own coping methods and tips on how to get through the Christmas season with a chronic illness so I’d love it if you shared them in the comments as they may help some of us!

Christmas is always going to be difficult for those of us with chronic illnesses and will likely set us back but I hope this blog post has given you some helpful tips about how to manage it even a tiny bit better.

Happy Holidays!

All my love,

Meg x

Knowing your limits and why pacing is so important 

When you have a chronic illness it becomes soo important to pace yourself, every chronically ill person knows that it’s one of the best ways to manage your illness. It means setting yourself boundaries and however hard it may be you have to learn to say no to things that will be too much for your body to handle.

Anyone that knows me and is reading this post knows that I am not the best person at pacing myself. I hate saying no to my friends and family when they make plans because I hate letting them down even if I’m not really well enough to see them. I also like to finish a task once I’ve started which means that I push my body past it’s limits which means that I end up really ill. This doesn’t mean that I don’t try my best to pace myself when I can though, I just find it very difficult to do however each day I’m learning to know my limits better and learning when I need to say no.

Pacing can be different for everyone and at all levels. Pacing for one person may be pacing themselves with uni work and for another it can be things as small as knowing the best time to wash your hair or get dressed when your body isn’t too exhausted for you to manage it. I have to pick and choose what I can do each day, doing too much can leave me in bed for anything from a couple of days to a couple of weeks.

Being chronically ill means planning everything in advance even if on the day you are too unwell to do what you had planned. I have to pay very close attention to my body and what my body struggles with and it’s limits. It’s all about balancing your rest and activity. Pacing gives you awareness of your own limitations which means that you can plan the way that you use your energy more effectively.

I find it hard to pace myself because before I got sick I was a relatively active person, I went to college, went out with my friends, spent time with my family and took part in sports. Now I struggle to be able to even wash my hair once a week, I tidy up rarely, I avoid stairs as much as I can, I can’t stand up for longer than a few minutes without needing to sit down because I quickly become too exhausted. All of these things that most people don’t even think twice about doing are totally energy draining for me.

4be0330d8569da6bc61992fed692dcce

There are days when I push through activities or social events I know I shouldn’t simply because I just want to enjoy myself, even if it is only for a short amount of time before I collapse from exhaustion. It can be hard to watch your friends and family get on with their lives and go out and do things you only wish to do. This weekend my grandma is having an annual firework party and my whole family are invited and I’ve said I’m going because I love this time we all spend together even though I know full well I will spend the following days stuck in bed feeling mega ill but this is something that I just can’t say no to even though It’s going to take it’s toll on my body. I think sometimes you have to do things like that because it can be soo isolating being stuck at home the whole time.

There’s a lot of ways that you can learn how to better pace yourself, it’s all about alternating your activity and rest. Finding ways to conserve your energy levels is also key to helping you to pace yourself. Things I find help me are things like when I have a shower I use a shower seat to help me save energy because standing tires me out, I also use a wheelchair when I go out because I can’t walk very far. It is very important to rest when your body needs and to not push yourself too far. There are lots of links and websites online that can also help you to pace yourself and give you lots of coping strategies. I have included a couple of links below.

https://my.dchs.nhs.uk/Portals/0/Health%20Psychology%20Pain%20and%20The%20Three%20P’s_1.pdf 

https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

I hope that you have enjoyed this post and whether you have a chronic illness or not I hope that you have learn’t more about how to pace yourself and how important it really is when you live with a chronic illness.

Stay updated, more posts to follow.

Lots of love,

Meg x

 

Invisible illness awareness week 2016

img_2618

This week, 26th-2nd of October is invisible illness awareness week. I and many others are sufferers of invisible illnesses and this week is about raising as much awareness as we can and to get the message across that YOU DON’T HAVE TO LOOK SICK TO BE SICK.

You see me in these photos, smiling, laughing and having a great time?…

 

but what you don’t see is all of the days spent in bed to fatigued to even sit up, all of the medication I have to take just so I can just about manage to function, all of the hospital visits, and the times I’m curled up in a ball crying from all the pain.

People like myself and others with invisible illness sometimes get pushed to the side and people don’t believe that we are ill just because they can’t see it from the outside. It’s different when someone has broken their leg because we can see it but for us invisible illness sufferers its different and can be very hard when people don’t believe that we’re sick.

I have M.E, Fibromyalgia and CRPS and all three of them are invisible (most of the time) and currently has no cure apart from learning coping strategies which I find a great help. When I do look sick and I can’t get out of bed because I’m too fatigued or in too much pain people don’t see that part as it’s impossible for me to get out which is another reason why us sufferers feel invisible.

 

So what are invisible illness?

There are so many different illnesses, these that I’ve listed are only a handful of illnesses that come under this category.

M.E, FIBROMYALGIA, CRPS, EDS, HYPERMOBILITY, CHRON’S, PTSD, DIABETES, ANXIETY, DEPRESSION, LYME DISEASE, MS, LUPUS, ARTHRITIS, CANCER, EPILEPSY, ALZHEIMERS, DEMENTIA, ASTHMA, ADHD and many more.

 

 

I hope that you’ve learnt about what are invisible illnesses. To help us to raise awareness on social media use the hashtag #INVISIBLEILLNESSWEEK2016

 

All my love,

Meg x

 

 

Connecting with others who have a chronic illness/s 

Having a chronic illness can make you feel very isolated and it can be extremely frustrating when your friends and family don’t understand what you’re going through. I think that it’s very important to connect with others who are going through the same illnesses as you because it can be so reassuring to know that you have those people there to talk to about things you are worried about, symptoms you may be unsure of or even when you need a shoulder to cry on knowing that they fully understand how you’re really feeling. It can be so comforting to know that those people really do understand what you’re going through and it really does have such a positive impact on those of us who do suffer from chronic illnesses.

I am very lucky to have multiple friends who are also going through the same chronic illnesses as myself. I find it a real blessing to be around those who really understand me and support me through the difficult times as well as the good. They say that you will never understand what a person is really going through unless you also have/ are experiencing it yourself which I think is definitely true. People around us really don’t realise how debilitating and limiting our illnesses are. I also find it’s so reassuring to have those friends around me who can give me advice but can also comfort me on my bad days.

‘WE DON’T ALWAYS NEED ADVICE. SOMETIMES ALL WE REALLY NEED IS A HAND TO HOLD, AN EAR TO LISTEN AND A HEART TO UNDERSTAND’

There are many ways of finding and connecting with people who have the same chronic illnesses that us sufferers have. Social media is one of the best ways of connecting with those who are dealing with the same illnesses that we are going through. Twitter, Instagram and Facebook are probably the best ways of doing this. There are often lots of groups on Facebook that are full of people who understand completely what you’re going through, there you can post any questions you may have and also comment on others statuses. I am part of a couple of Facebook groups to help me with my illnesses and I find that they help so much and I really feel understood.

Other ways are through local support groups. Support groups within the local community can be difficult though for those of us who are too unwell to leave the house, but for those who can make it out then that’s fab! I have had a couple of friends who have been part of local support groups and they have found it a massive help to them which is good. Online forums is also another way of being able to connect with others experiencing similar to what you may be going through and there you can find lots of threads filled with hundreds of questions and answers.

While it’s important for those of us who do suffer with a chronic illness/s it is still extremely important to still talk to our friends and family about how we are feeling and to also help them to understand more about what we’re going through. It can be helpful to find leaflets for them to read and get our doctors to sit down and explain everything about our illness so that they can learn and understand more and more about how it affects us continuously. It’s very important that we are very honest to our friends and family about how we feel because if we don’t tell them or let them see us when we are at our worst then it will be harder for them to understand how bad things can get for us.

I find it definitely helps me to deal with my chronic illnesses by having a friend who also experiences what I am also going through, to have someone who you can vent to knowing that they completely understand but to also know that they are there to support you through the positive things in life too. I am so incredibly lucky to have the friends and family that I do.

I hope that this post has helped some of you with or without a chronic illness and that you will keep up to date with my future posts.

All my love,

Meg x

Missing out on education when you have a chronic illness 

I left college nearly a year ago now and for me and many others with chronic illnesses we are sometimes too unwell to continue with our education and are forced to sign off our courses. I know that when I went into college for the last time to sign off my course it really made me quite upset and brought me into realisation how poorly I really am.

I struggled for the last few college months that I was there for and as my health continued getting worse and worse, I was lucky to even finish my first year so I’m grateful for that. I missed a lot of my deadlines and I struggled to keep up in class, I could barely manage to be in a whole lesson and struggled to not to fall asleep part way through. I would get headaches, dizziness, light/ noise sensitivity and a whole bunch of other symptoms but I pushed myself so hard to finish with a distinction * which I did so it was all worth the pain and sickness in the end. I was very lucky to have such caring and supportive tutors who went beyond their limits to help push me to finish and that is something that I am extremely grateful for.

 

Growing up we have our dreams, plans and hopes for our future and to get so far and then having to stop our education, for me that was totally soul destroying.

During my first year at college I had made so many friends and loved going out shopping and going to gigs when I could. When I was forced to leave my education due to my health I also found that I also left all of my college friends behind me. I’m lucky that I have a couple of friends who have stuck by me through it all which I am so grateful for because once I became ill I lost so many friends/ family. It’s like they no longer want to be around me because I’m not well and I can’t go out with them anymore.

It’s now a year later and as I watch my friends return to college or start their university courses it makes me very upset and angry that I can’t be doing those things too.

Despite having so much taken away from me I still have my musical ability which I am still using for my weekly piano lessons which I love! I will also be able to go back to college when I have recovered enough to cope with the demands of my course.

.

I hope you’ve enjoyed this post, please remember to share and subscribe for email updates and if you have any questions leave them in the comments box below.

.

All my love,

Meg x

Using a wheelchair 

 

When I first became ill I never imagined that I’d ever have to use a wheelchair or that I’d ever get as poorly as I am now. I don’t think that anything could ever prepare you for the struggle of living with a chronic illness.

At first I really hated using it and I hated anyone knowing that I sometimes have to use a wheelchair to enable me to get out and go places. I tried so hard to find ways to avoid using it at first but in the end I came to accept that I need it to enable me to do things that without I wouldn’t be able to do.

When I get to exhausted and I struggle to walk very far, that’s when I use it for  going places like the doctors and if I go into town which isn’t often but I do try to go places whenever I am well enough. If I go out just to go to see family then I don’t need it as I will just be indoors but I do use it for pretty much everything that is out of the house. I do have days when I feel able to walk a bit so I take that opportunity to do so which is good.

It’s difficult to accept that sometimes I need help with things. I have always been a very independent person, it was when my health started to go downhill when I had to start being dependant on those around me which I found really hard to do. When I need a bit of help because I can’t manage to do something on my own, for example I sometimes need help washing my hair and times when I can’t lift my cup to my mouth. It’s extremely frustrating for me, things that should be so easy to do I sometimes can’t. It makes me angry because of how frustrated I feel and sometimes I feel like a burden when I have to rely on people who help me when I need it.

I found it very difficult to tell my friends and my family that I sometimes have to use a wheelchair to enable me to go out places even if it’s just going for a doctors appointment and it’s not far to walk it can be a long and exhausting walk for me.  What may seem easy for you can be like climbing Mt. Everest for me and others with chronic illnesses. 

I am so lucky to have an amazing supportive family, especially my brother and sister who have been absolute angels and know when I don’t feel well or if something is too much for me to handle. I’m so blessed to have them both and to know that they understand if I can’t see them because sometimes I’m not well enough. I’m also very lucky to have my amazing friends who have stuck by me through it all and also my boyfriend and his family who look after me soo well! 

I’ve learnt that using a wheelchair is nothing to be ashamed about and that its just something that some of us need to use in order to help us lead a more normal life and allowing us to get out more. 

I’ve had people look and stare at me and tell me that I don’t need to use a wheelchair at all because I can still stand up or because I don’t look sick enough to have anything wrong with me and they just think I’m lazy. I live with an invisible illness which means that by looking at me you can’t see anything wrong which is why a lot of people don’t believe us. It’s different though if someone has a broken leg because they can see that they have something wrong. This is the case for many others who live with invisible illnesses and that people just assume that you have to look sick to be sick and to be able to use a wheelchair. Yes I can walk but that doesn’t mean I don’t need to sometimes use a wheelchair. Nearly all of us with chronic illnesses have our good days and our bad days which means that on days when we we are well enough it means that we may not need to use a wheelchair, whereas if we have a bad day the next day we may have to use a wheelchair. It’s difficult for those who don’t understand and don’t believe you because they just think that if you can do something one day it means you can do it everyday. 

Not only do many of us with chronic illnesses have to rely on a wheelchair to get about, but I know a few of my friends who suffer with chronic illnesses who use crutches or a walking stick to get around. It can be daunting at first because you get worried about what people will say to you but if it helps you to go places that you wouldn’t normally be able to do then go for it! Decorate your crutches and walking sticks with stickers and washi tape to make you feel more confident when you use them. Hopefully then you will have less people saying that you don’t need to use them to people saying how cute and pretty they are!

I am not ashamed of my disability, but  I am ashamed of the people who judge me without any knowledge of what I’m going through.

I hope you’ve enjoyed reading this post. Please leave me some comments below and subscribe and share. 

Sending you all lots of love and hugs,

Meg x