M.E awareness week #1weekaboutME 2015 photo challenge created by Vicky.
Day 1 – 11th May 2015
Photo – A quote relevant to M.E
Comment – How it feels to have Myalgic Encephalomyelitis
Having ME feels like you are trapped inside your own body which doesn’t work properly and is failing you. You don’t have control of it anymore, it doesn’t respond or work in the way it used to and things you were once able to do are now just a memory you long to be able to do again. Imagine how exhausted you would feel after running a marathon, that’s how M.E sufferers feel from the simplest activity like sitting up in bed and it constantly feels like you have the flu but worse. Imagine spraining every muscle and breaking every bone in your body, then carrying someone equivalent to your own weight who is clinging on to your legs all the time whilst having muscles spasms. The pain in your muscles, bones and nerves is almost unbearable. Your body doesn’t respond automatically, you have to remind it to breathe, you tell your legs to move but they don’t, you speak but nothing comes out. All your sensors are extremely sensitive, your skin is so sensitive even a blanket over your legs hurts, having the curtains open is like someone is shinning a bright torch in your eyes so you have to live in darkness, someone talking normally sounds like shouting. Ice cold one minute and boiling hot the next. Headaches, sore throat, ear ache, dizziness, brain fog, insomnia and lots of other symptoms daily. Then imagine staying like this not knowing if or when you’re going to get better and there is nothing you can really do. Support systems break down, friends move on, people find it hard to understand so they leave your life. Worst of all imagine being told ‘ME isn’t real’ and ‘it’s all in your head’ even by medical professionals. We have to fight every single day of our lives, fight with our bodies to keep going, fight to get people to understand that M.E is a real physical illness and fight to keep smiling. Living with M.E isn’t easy but you learn to get on with life the best you can even when it is completely different to what you had planned or thought your life would be like but you have to make the best out of every situation and at the end of the day there is always a reason to smile 🙂
Day 2 – 12th May 2015
Photo – The face of M.E
Comment – People without M.E should be aware…
People without M.E should be aware of how they act and what they say to sufferers, just act normally like you have always done. We may be suffering from an illness but we are still human, we don’t want sympathy or for you to pity us and you don’t have to treat us completely differently. When you first become ill lots of people act differently towards you or seem to not want much to do with you anymore probably because they don’t understand what is happening to you. Trust us we didn’t understand either. Know that you can come near us you aren’t going to get ill, you can’t catch M.E. Even if you don’t know what to say to someone just say I don’t know what to say but I care, that’s a way to start a conversation and as long as we know you care that’s the main thing. When a suffer becomes too poorly to keep in contact try and keep in contact with them. We don’t have that much normality in our lives so tell us about whats happened in your day, even if you think it’s really boring nothing can be as boring as just staring at your bedroom ceiling all day. It’s always nice hearing what’s happened in someone else’s day or some gossip you found out about, it distracts us from the pain we are in for a few minutes and makes us smile. Every suffer is different some may find it too upsetting hearing about what they are missing out on it but others like me love to hear all your news so speak to the person, don’t be afraid to ask them questions. Understand that if we have to cancel seeing you or going to an event you had planned it’s nothing personal and we would have loved to have seen you it’s just our body wasn’t well enough at that time but don’t let that stop you from inviting us again in the future. Don’t say anything like ‘I know how you feel, I get tired too’ or ‘can’t you just get on with it’ because the tired you feel is nothing compared to what we feel daily and if we could just get on with it we would, anyway the majority of the time we do just get on with things and keep our suffering quiet. And mostly importantly don’t say ‘you’re just lazy’ or ‘your so lucky you just get to lay in bed all day’ We are the opposite of lazy and our bed days aren’t like healthy peoples we can’t just lay in bed all day watching Netflix, our bed days are just lying there physically and mentally doing absolutely nothing because our bodies aren’t well enough, we would do anything to be well enough to get out of bed. If you see us in a wheelchair it’s no big deal you don’t need to make a big thing about it but you don’t have to ignore it either, we have to use wheelchairs and disability equipment sometimes and that’s hard for us so don’t say any mean comments or discriminate because things like that can really hurt and upset us. If you see us parking in a disabled parking space but get out and walk don’t be so quick to judge and think we don’t have a right to be in the disabled spot. Somedays we can walk, others we can’t and when we can we can only walk a short distance which is why we have to use our blue badge. Not every disability is visible so don’t be so quick to judge. Just treat sufferers like you treat everyone else because we are human, treat us normally and don’t discriminate.
Day 3 – 13th May 2015
Photo – Comfy clothes
Comment – Something that gets me through the bad days is…
Something that gets me through the bad days is talking to friends and family, spending time with my dog and playing the glad game. Everyone has bad days but at the end of the day there is always something to smile about. ‘Everyday may not be good, but there is something good in everyday.’ One of my favourite childhood films is Pollyanna, it’s about a little girl called Pollyanna who is always so happy and positive and she shares her optimistic outlook on life with those around her by playing the glad game. The glad game is where you focus on the good and find something that you are glad about in each day no matter how big or small there is always something to be glad about. One day Pollyanna gets into an accident and becomes paralysed and she looses her smile but all of the people she helped along the way go visit her and help her find her smile by playing the glad game and in the end she is able to walk again. Finding the positive in a situation isn’t going to make me better but it’s always good to focus on the positives instead of the negatives. What are you glad about?
Day 4 – 14th May 2015
Photo – What you do on a good day
Comment – If I had an unlimited amount of spoons for a day I would… (For those who don’t know what spoons are you can read about the spoon theory here)
My good days at the moment are spent enjoying doing bits and pieces for Smile For ME and I absolutely love doing it 🙂
If I had unlimited spoons for the day I would just do normal things which I used to take for granted and things that I haven’t been able to do for years. I’d get out of bed in the morning straight away without having to wait until the dizziness settles and for my muscles to wake up. I’d throw open the curtains instead of living in a darken room because my eyes are too sensitive. I’d walk to and from the bathroom easily multiple times instead of struggling to get there. I’d have a shower and wash my hair and have the strength to be able to use my arms for the rest of the day. I’d walk around the house and go up and down the stairs lots of times instead of being unable to get down stairs at all. I’d watch a whole movie in one go without having to take rest breaks. I’d eat food which doesn’t have to be easy to chew or cut up. I’d go for a really long walk with my dog and explore the world outside of my house. I’d see my friends and family, go shopping, dancing, ice skating. I’d love to run and feel the wind in my hair and see the dappled sunlight through the trees and feel free to keep going all day. It would be so lovely to be well enough to do all those things again even just for a day.
Day 5 – 15th May 2015
Photo – Something M.E makes you value
Comment – Having M.E has taught me…
M.E makes you value your family and appreciate how much they care and all that they do.
Having ME has taught me a lot. It’s changed my life completely and made me who I am today. Although I’ve lost a lot, I’ve gained a lot too. I lost the ability to do almost everything so now I value everything. I’m grateful my body is well enough to sit up in bed as there have been times when I wasn’t well enough to lift my head off my pillow for months at a time. I’ve learnt not to take anything for granted. I used to just assume I would always be able to do basic daily things like walk up and down the stairs, it never crossed my mind how much of a big thing it would become. It’s taught me to appreciate the little things in life and to find the good in everyday. It’s taught me to appreciate all the more the importance of family and friends and given me the insight to being a better friend because through all this I have learnt what makes a good friend and what doesn’t. It’s taught me to treat everyone equally and be more thoughtful because anyone could be fighting their own battle and no one knows about it. Having ME has taught me that what doesn’t kill you only makes you stronger and I’m stronger for going through this.
Day 6 – 16th May 2015
Photo – Share a spoon
Comment – My best advice to a fellow spoonie is…
My best advice to a fellow spoonie is to remember you are not alone and do what’s best for you as you know how M.E affects you better than anyone else. Accept you need to listen to your body and know when you need to stop which can be hard because you want to carry on but you have to learn to stop fighting against your body and start fighting with it. Everyone sufferers differently, different severities and various symptoms so things that help others may not help you but in my experience pacing helps me. I’ve had to learn how to pace, which can be frustrating but is necessary to avoid boom and bust which makes you worse in the long run. Find a stable baseline which you can do every single day, however low that may be to start with and then very slowly try to build on that. Keep fighting and accept improvement is not just a straight line, but never give up. Talk to other spoonies online, there is a whole community of us where we have more than just an illness in common but it’s always nice to know there are other people going through the same thing as you. Everything you go through makes you who you are, just keep fighting and remember there is always a reason to smile 🙂
Day 7 – 17th May 2015
Photo – What’s pushing you to recover
Comment – How far in your recovery do you see yourself 1 year from now?
Everything is pushing me to recover, I’m so determined to be well again or at least at a good level but unfortunately no matter how much I want it or am determined to it doesn’t work like that. I would love to be able to get outside and see the world other than the walls of my bedroom or my house and to be able to walk my dog Rosie around the park.
ME is a fluctuating, relapsing illness so it’s hard to say I could be anywhere because you have to take a day at a time but I hope by this time next year I will be well enough to get out of the house for a couple of hours a week and on my way to start exploring the world 🙂