I have written and rewritten and deleted and started all over again with this blog post several times now, it has sat in my drafts for months! All because I was worried about how I will come across to people but I have wanted to write it for a long time and no matter how many times I delete it from my drafts, it always ends up back there and if I don’t put it out into the world i think i might explode! Also… I feel the need to explain it, I don’t know why, maybe to justify it somehow but here we are!
Chronic Fatigue Syndrome causes all sorts of problems for me and if I am not surrounded by understanding, caring people then I could end up in a pretty vulnerable situation. It has taken me a long time to admit to myself that I need people, I hate it. Since I was a child I have been independent, I am the first of four, I know how to occupy and busy myself, I know how to look after other people and set the best example I can for my siblings, but I don’t know how to be looked after. As much as I might hate to admit it, as much as I steer clear of sounding like a needy little girl, if the people I surround myself don’t care about my wellbeing then I could end up in some dodgy situations health wise. I know this because it has happened to me, it wasn’t always the other persons fault, at the end of the day it is my decision to continue to be around those people which in itself is NOT an act that represents what I need from them. There have been times where, if I had only put my foot down and said “no, i need to go home NOW or I’ll be in bed for 3 days” just once, I think it would have changed the attitudes of those around me.
Maybe they would’ve distanced themselves from me, maybe they would have been offended, angry, but I’d be at home resting like i needed to be. It was those same reactions that I feared, those same reactions that stopped me from looking after myself in the first place! To be frank… if those were the reactions I would receive then I was hanging out with the wrong people. As much as I am learning to look after myself and stick up for myself a little bit better, it is nice when your family and friends are understanding / caring enough to remember that you’re… ill.
I have gone out with friends who, like older teens/ people in their early twenties like to be out and they liked to be out at night! I have gone out in the past, not been the designated driver – cause I can’t drive ( a whole other story ) – and ended up out and somewhere I didn’t want to be until the early hours of the morning because I didn’t want to speak up and be ‘that guy’ who said “come on guys its getting a bit late now we should probably head home!?” This, again, isn’t anyone else’s fault, at the end of the day, I met these people, I got to know them and I knew that this is what they liked to do… or at least pretended to? (I can’t imagine why anyone enjoys sitting in the cold at night to be honest.
The fault lies entirely with me, like I said, I got to know these people and was very close with some of them and although I’ll be forever disappointed that the ones who called themselves my closest friends didn’t think to check in with me, or think about my health I didn’t really give them a reason, I was out trying to do the same things they were, I hid the next day in my bed because I was so unwell and often disappointed I was ill and still didn’t have a particularly good time. I didn’t give those friends a reason to think about my health, not really, i was young and so were they, the problem is when nothing changes.
Now, I have to take into consideration what a friends idea of a good night with mates is, to be honest it makes me feel like a right turd, as if I am interviewing someone for the position of friend / carer, but the truth is, I have to trust people around me a lot more than most people, overwhelming fatigue can suddenly fall on me like a truck, if I am out with my parents, I let them know and we go straight home, I need to be able to trust a friend to do the same. Does this person like sitting up all night out in the cold and dark making noise and being general annoyances to… well, everyone?Or do they like watching a movie in the warmth of our homes / a cinema / eating food / generally not being outside til’ the early hours? You get my point, I have to consider what they like to do even though it might sound childish and silly but at the end of the day, I don’t want to be a party pooper for them and if were not into doing the same things anyway then we’re gonna have some troubles other than me feeling crappy…
I don’t always like admitting that really a friend needs to be ‘caring’ or ‘understanding’ I feel like I sound like a needy little thing, I’m pretty easy going generally, I’m smart and have learnt to tell people “no” if I don’t think I’ll make it to the end of the night/event/activity. One of the most confusing aspects of my illness for me and the people around me is that sometimes I seem okay to the outside world – though I am often in pain and feeling deep fatigue, after years of this I have learnt to live with it, my body has adjusted, which is a good thing! But sometimes I can’t move my arms and my mum has to help me change from pjs to pjs! So sometimes I need to cancel things last minute, I never know how the heck I am going to feel the next day or in the next hour, having a friend that doesn’t complain and moan when I need to lay down instead meeting them is really helpful, one friend used to just get into bed with me if I was feeling poopy which was cool, I’d even just snooze for a bit while they were on their phone knowing they felt comfortable chilling but was still there for me meant a lot!
A lot of my friends are older than me, most with children as i know them through church, other friends surprise me every day with their understanding!
Having not slept properly for 7 years and being in pain everyday for those 7 years can take its toll on someone, for me its caused a lot of depression and frustration as well as anxiety about going out at all. This is where the understanding comes in, like… big time… Often if I am feeling anything negative I withdraw into myself, my phone lands on the other side of the room where I throw it, I go to my bed and I don’t leave – I definitely don’t suggest these for coping mechanisms but its what I have noticed I do, I practically become uncontactable for anyone but the people I live with who physically walk into my room and poke me until I answer. The fact that I now surround myself with people who are mature enough to understand this, who will be there for me when I am ready or turn up just to keep me company has really helped in more ways than they will ever know! Some friends have gotten angry with me, then didn’t know who to react when I tried to explain it to them, other fiends have left me to it because I am ‘boring’ when I’m like that so trusting people can be hard in the beginning, I can’t imagine meeting anyone in terms of a partner at the moment, no only do I have enough to deal with (lol) but I got a lotta baggage if you can’t tell 😀
Having a friend who knows when to leave me alone and when to bug the crap out of me until I get outside is not only helpful but is a bloody good reminder that I’m not on my own. Obviously, I don’t rely entirely on friends for support etc, my mum is my hero, she is there for me like no one is, she’s dressed me, bathed me, helped me up and downstairs and kept me from falling flat on my face when I’m dizzy, really between her and my dad I don’t know what I’d do without them! If they didn’t care / didn’t understand I wouldnt be going to university, writing this blog and I doubt I’d be here at all. It has been my parents pushing me forward when I need help and catching me when I fall back, taking me to appointments, pouring water into my mouth and turning me over in my bed when i am too weak who have kept me going for so long.
For so long i have relied on them and been too embarrassed to let anyone else see me that way, but friendships are obviously an important part of anyones life and in my case, its knowing that I am safe in someone else’s hands whom I can trust if I need to, so thank you to those friends, who have been there for me when I am not fun, when I am in tears and when I need a lift home quickly. You guys help me more than you know.
Sometimes it can feel kinda ‘all about me and my problems’ when I a writing these blog posts, but I really think its important that I share different aspects of having CFS/fibromyalgia to help those with it, or those who have friends with it understand how much it affects different and sometimes random aspects of life!