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A new way of life

I used to be the most organised person ever- lists of lists of lists. Alphabetical, colour coded, size ordered you name it. I am soon to be an avid spoon user. (something I will explain in another post)

People are very quick to pile us up to the top with all their ‘problems’- I say problems in inverted commas as life problems differ for each individual. If your disability isn’t visible it does not mean it is all in your head. It’s okay to say ‘I’m really sorry but I don’t have the mental space to deal with that today’ or ‘can we discuss this another time?’ ‘I’m feeling a bit overwhelmed at the moment’ I have always been the advice giver that the friend (acquaintance) whose crying at 2am calls up & my response is always ‘sure come round’. I’m learning to be able to say- right now I am too drained without upsetting others. But it’s proving very difficult. It’s hard for me to come to terms with the new me as I’m sure it is for those around me. I come across sometimes as if I no longer care- I do I’m just drained! But when a friend of mine said to me ‘people always seem to call you when they’re stressed or upset yet it doesn’t seem to be reciprocated- that stuck. Having always been the person people rely on to do things or not say no- I have a huge amount of guilt & am unable to say no to anything! Right now I am not very emotionally stable myself & I do know that.

Accepting help & accepting you need help is definitely the start of getting better. It’s okay to say no if it means your health will be better off tomorrow.

Just because I could yesterday doesn’t mean I can today.

Having M.Ebrain fog or fibro fog may not be obvious to others- but it’s when my frustration shows most. I stop paying attention to conversations as I become overwhelmed . Forget the word I want! In a five minute conversation I could ask what we were talking about 3-4 times. ‘I was going to say something but I forgot wait what were we talking about’ I am a Mess. As an intelligent or high functioning person with a disability trust me the changes I’m experiencing are an annoyance. IT’S SO FRUSTRATING! I have accepted my new traits of bitterness and ‘being a bit blonde’. Without blowing my own trumpet (saxophone 😏) I must admit I always have been a very independent person, I have always succeeded well in my studies & would say I’m a very well rounded intelligent person. Well. I WAS! Now I am ditsy, forgetful & away with the fairies!

My house gets chaotic when I am sick. I forget things. Lose things. Get stressed over small things. But that’s okay. The world won’t end if I don’t take my washing out the machine because I become to fatigued- yes I’ll have to wash it again but thats about it. I am discovering the ‘What ifs’ of life.

A beautiful photo I took of myself after a 28 hour nap?!? If you can even call it that. These days are more frequent if I’ve had a busy day- that doesn’t have to be physically it could be socially or emotionally. There are many problems of napping which ( I will save for another post)

You can be smiling in a photo appearing to be loving life even if in reality all you want to do is curl up in a ball in bed. On this day I did take advantage of a disabled carers ticket however I should have asked for more help with mobility. I usually can manage okay on a really good day- I can be sore & tired & slow but I’m okay- it’s days like this which result in the image above. (My legs look exceptionally hyper-mobile in this!!)

I’ve noticed every person gets overwhelmed or stressed with different things & that’s okay. Everyone’s brains work very differently, some people like to be stressed or busy & others fear the feeling of being overwhelmed.

Sit in a cafe & observe, people watch. Look around and listen out to others conversations. Listening to middle aged beautiful women discuss their day to day issues- I cannot help but laugh. ‘Shes only got clotted cream not double cream’ BOOOHOOOOOO!! ‘The pantry was quite small’ ‘the house has 3 bathrooms but no ensuite’ reality for the average Joe & these privileged people is very different. ‘I have a spot on my chin’ ONE SPOT. ‘I spilt a crumb on one top I like and it stained’ annoying but not life changing. Get it? EVERY ITEM OF CLOTHING I HAVE! You can be privileged in many ways not just financially. Being thankful for what you have be it family or warmth can impact your way of thinking a lot. In the corner of the cafe will be someone sat silently alone- most likely with headphones in or just keeping them self to themself. It’s likely they are experiencing real world problems perhaps with no one to talk to. Watch as people avoid eye contact in the streets people- to ignore what they don’t want to see. Disability. Homelessness. ‘Abnormalities’. Some people’s small worries are subconsciously changed into bigger worries. It’s not a fault but merely a selfishness we as British humans have.

For me I struggle to accept the fact that there are people dying & there are really really poorly people out there yet I’m worried about my fatigue. As a society we are bothered about the little things we feel matter in our lives, until we experience real problems which cannot be fixed so easily. We are very self involved. As someone who struggles with body confidence issues I have been told multiple times by therapists ‘no one is looking at you t, they’re too busy looking at themselves and their new lipstick that looks the same as the other 50 in the mirror. And it’s true. It’s the way our brains have been conditioned. If you won’t be worried about it in a few hours, days or weeks it’s probably not worth worrying about.

Besides my parents & sister not many people see the emotionally unstable side of me- I am happy to keep myself to myself. I rather it this way. Smile & power through. Pacing myself definitely needs some work to avoid these instabilities and I can accept that.

Talking about your struggles isn’t an annoyance it’s an education for others.

I am learning to pace myself (something I am very bad at) I tend to boom & bust. As someone who is new to being chronically ill I find it difficult to understand why I can’t do the things I should be able to or how if I do ‘normal 19 year old things’ I pay for it physically and emotionally for the days to come. AGH


For me – my problems feel huge- I struggle silently, for someone with a week to live they may think I’m overreacting. I’ve learnt that it’s okay to feel overwhelmed with your own problems but also be able to accept others. For me my depression often stems from ‘I don’t know why I’m feeling sorry for myself other people have it worse’ not wanting to be feeling depressed & no specific reason to be feeling so low. When I think about it, the inability to move my arms without pain is a big deal. Being unable to stay awake for a whole day or pop my medication out the packets due to lack of strength & fatigue. The constant brain fog- not paying attention, losing things etcetc.. this is a big deal. For other people- their makeup not lasting all day or missing their bus or the colour of their lipstick is a big deal.

My point is & I am not here to belittle others at all: having a chronic illness has definitely improved anxieties for me & put these small things a lot more into perspective. I still feel sorry for myself- Ofcourse. Who doesn’t? But a lot of eyes definitely need opening to a different way of living. If I have a small stain on my trousers it’s not going to ruin my day & I won’t remember it. If they mess my drink up in a restaurant it’s annoying but I’m not going to shout about it. Acceptance is very important.

If any other 19 year old swapped bodies with me for a day- ha!


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