Don't ever compare my illness to other people's different illnesses as a way to highlight the fact that I don't push myself enough. I push myself every minute of the day from the moment I open my eyes. I push myself to get out of bed despite the fact I feel worse than when I went to sleep the night before, despite the fact my entire body hurts, despite the fact my throat is swollen and I feel like I have fallen down a flight of stairs and not like I have had 8 hours sleep. I push myself to get dressed, I push myself to talk to people, to fight through every hour of pain because I refuse to give up. Some people with my illness are housebound or have to use a wheelchair and if I push myself too hard I could end up like that and the thought scares me terribly. My illness goes through ups and downs and relapses. I try to avoid relapses but I do tend to do too much especially when I am anxious or depressed. Have you ever considered that it's not even about pushing myself to do stuff in order to 'make the most of life' ? It's worth knowing that when I say I can't do something then I sometimes I physically can't do it. It's all well and good saying I should 'make' myself come out because it will do me good but if I have overdone it or I am having a flare up I might not even be able to move so getting out of the house would be physically impossible. When people say 'it's about thinking positive' or 'there is no such thing as can't' it feels like they don't understand at all. It feels like people underestimate the pain, the exhaustion and the weakness. Twelve years ago I didn't push myself like this and spent nearly every day in my pjs, lying on the sofa watching TV.. so I've come a long way but I have had to sacrifice my health because of this and my symptoms are actually far worse now than they were back then.
Don't assume that I am ignoring you because I don't answer the phone or I haven't responded to your Facebook messages, to your texts, or to your whatsapp chat. Sometimes I can't cope with all the information because it overwhelms me. I struggle to explain how I am after writing a long text message/email or having a phone conversation. When I am writing , either on an electronic device or on paper, my eyes blur, my hands ache and I get shooting pains down my fingers and neck. I was diagnosed with repetitive strain injury before touch screen mobiles came out. Typing on my mobile back then actually caused it, so I have to be extra careful. I also can't rest as I know I have to keep up with the conversation so my anxiety ends up being aggravated. If I spend too long staring at the screen whilst concentrating then the next day my vision is affected and it's like I'm looking through slightly frosted glass and I have pain in my actual eyeballs and all over my face. I have had to have lengthy, important phone conversations in the past and afterwards been literally unable to talk from exhaustion and throat pain and so weak that I have burst into tears and almost collapsed. This can also happen during conversations with friends which is why I avoid phone chats. A phone chat is just as tiring as an actual face to face conversation.
Don't forget to ask me if somewhere is too loud or busy. One of the things that drains my energy and exacerbates my exhaustion is noise, social interaction, different lighting, certain smells, and any other kind of stimulation. Busy places will tire me out far more quickly and usually just looking at a large crowd of people can totally exhaust me. I am hyper sensitive to smells and sometimes certain smells can make me feel sick or make me dizzy or give me severe headaches. Often these may be odours that other people don't notice or can't even smell. Lights are very very disorientating especially energy saving light bulbs, and lights in hospitals, shops etc. If I have to sit opposite a window that has light coming in it will affect me very negatively, especially if I'm talking to you and you are sat in front of it. When I have an hours session with my therapist I am unbelievably tired due to the long conversations but also due to the horrible lighting. I come out and I struggle to speak and my eyes feel blurry and heavy. Lights are the worst, they make me feel physically sick. I'm finding it difficult to even explain this one.
Don't get angry at me because I have to know our dinner or lunch plans in detail, specifically what time we are eating. A lot of the time (markedly worse at certain times during the month), if I haven't eaten for a few hours I get shaky from low blood sugar (reactive hypoglycaemia), and struggle to even hold a knife and fork. My words slur, my eyes blur and I feel disoriented and confused. I have even been accused of being drunk. It's embarrassing for me but it's such a scary feeling because it can be dangerous and it's the main reason why I don't cook for myself.
Don't moan at me because I struggle to make plans and when I do they are like a military style operation. I don't know how I am going to feel next month, next week, tomorrow or even in the next hour. My illness is unpredictable and erratic. This is probably one of the most frustrating parts of chronic fatigue because it kind of takes the fun out of things that are supposed to be enjoyable. Spontaneity is exciting but it is so hard for me. I need to know where we are going, what time we will get there and back, what we will be doing when we are there, what I need to wear, if there is lots of places to sit down and will it be noisy because like I have already said, noise really affects me.
Don't forget that although my illness doesn't define me, it does restrict me, and I hate that. I used to be really active so that just adds to the frustration.
Doing more than one thing at once is exhausting but this doesn't mean I don't do it. So don't be surprised if I struggle to listen to you while I am typing on my mobile or if I can't follow a sat nav because I am taking in all my surroundings as we whizz past them in the car, whilst the radio is also on in the background.
Don't hide my updates on social media because you think that they are too negative and they 'bring you down'. Reality check: life can be shit at times, if you want sickly sweet sunshine, rainbows and happiness, watch Disney. If you don't want to read my updates then 'unfriend me', both online and in real life. The world is so full of fakery and all people do when they only post positive, sugar coated updates is add to this false world. As Ronan Keating once sang, 'life is a rollercoaster'.
Don't always believe me. I know that sounds crazy but I do lie. When you ask me if I'm getting tired or if I want to go home yet I will often deny how bad I am feeling because I don't want to 'give in' and most importantly I don't want to ruin things for you. I want you to enjoy it when we go places, I don't want to be a killjoy. I feel like I am letting you down if I can't do all the things that you want to do or see all the things you want to see. So I'll often carry on and deny that my legs feel like jelly and I'm struggling to stand up or even see properly. I might say I feel bad but I probably won't say just how bad.
Don't forget to tell me if you have a virus and we are supposed to meet up. I have a low immune system and if I catch what you catch it will take me a lot longer to get over it and it will cause a flare up of my other symptoms.
Don't forget that what you see is probably not what you get. I usually end up on the sofa or in bed when I have spent time with you. This is because I have chosen to use my energy on having fun with you. If you want to understand more then research the 'spoons theory', because this explains how people with chronic pain and illness cope each day. I have a limited amount of energy each day and I usually pace myself as much as possible, resting in between activities. I don't do this as strictly as I should which is why the occupational therapist discharged me at the hospital. They wanted me to time EVERY single activity in my day and stop each one just before I got tired or felt pain, and I refused to regiment my life like that because to me that wasn't a life. However, if I meet you for dinner plans I have probably just woken up from a long sleep or rest and getting ready has triggered all my symptoms again. So excuse me if I am flustered.
Don't judge me on what I did yesterday or what we did together last week or last month. Like I've said, every day is different. So we may have walked through town last week but today I can't walk as far or walking will affect me a lot more. A walk that is short for you is not short for me on a bad day. It's like that saying, 'try walking a mile in someone else's shoes'.
Remember that if my parents didn't do everything that they do for me I would probably see you a lot, lot less and we wouldn't do a great deal. If I cooked, cleaned, tidied, drove etc then I'd have no energy to leave the house. For everything that they do for me I am truly grateful. I am also truly grateful to have you in my life and for the fact that you are reading this and trying to understand. I know at times it is difficult to deal with or you don't know what to say, but just being there and being you is what makes me happy.
