Every few years, I get a sudden feeling of utter dread....is it just me?? I think things like 'what am I doing?', 'where am I going?' and 'do I want to do that?'.....I hope it's not just me. I have so many big ideas that just exhaust me....I know I can't do them on my own, I don't have enough strength and this annoys me.
I know I'm not the only one who gets exhausted at thoughts of life and surely I can't be the only one who every now and then thinks the world is just too much.
When I began this blog I didn't really want it to focus on mental health or disability however, these things are such a big part of my life I feel I'm probably not doing myself many favours by wearing my happy costume most of the time. As I am getting older I feel more aware of people looking at me thinking 'how does she qualify for a concession bus pass?' and 'why is she taking so long to get down the stairs?'. I've recently had similar discussions with the DWP who've recently told me I've helped myself too much. I honestly feel the world would be nicer to me if I wore a patch over my blind eye and used my crutch full time. The answer to this conundrum is a) I'm not a pirate and there's no need to cover my 100% blind eye and b) I honestly feel people would look at me like I'm a liar. There's a problem here and it's not me! I am aware there are many people who opt to not have surgery for eye problems, the eye will become discoloured or the eye socket may shrink and so on....but because I demanded the eye hospital to blind it or else, I almost feel I have made life harder for myself.
I am well aware most people would feel nervous and anxious when agreeing to surgery however, I cannot see it in that way. For me, surgery is positive, it's there to save my life. As soon as I become scared, life will become more anxious.
I really want people to see why I am blunt, why I express strong opinions on health and other matters. So many people seem to see the world with Disney glasses, pop them on and we'll all skip around....now those are glasses I would wear....! Just to note, I wear glasses full time, so I'm not slagging off anyone who wears them!
This weekend I realised that in some of the activities and events I take part in, my life would be easier with a crutch. Even just doing the food shopping, when I bash in to someone on my blind side and they look at you like you're some kind of shoving terrorist. I'd rather not be looked at like that, it makes me sad. So, would life be easier if I played up my disability? One million percent yes! Every time someone gives me the evil eye, it makes me sad. As I get older and the vision in my good eye is becoming worse, it becomes more of a problem. So, moral of this story, if you happen to see me with my crutch, give me a high five!
Ok, so back to being a misery! I get sad....a lot. It's not easy fighting with yourself everyday, there's never a winner and I just knock myself out! Don't get me wrong, I love a good fight but fighting with yourself just isn't cool man!
Right, depression....anxiety, sadness, adjusting, living....all these things are hard work. Harder than any degree or occupation or climbing any mountain. To be honest with you all, it's not something I preach about. I don't think it's shame, I think it's more like I've had brain surgery, can anything else be that bad?! Well it can. For almost 17 years I have been under a psychiatrist. I've seen every type of mental health worker you could imagine. They don't give t-shirts out in the NHS but if they did I'd have them all, I could probably make a patchwork quilt to cover 100 people!
Life is hard. It's hard when you have no health worries but harder when you do. I've put up one hell of a fight in the past but like any boxer, when you get older, the fight gets harder! Depression and anxiety doesn't make you weak, it makes you stronger. When you're fighting daily and doing your best to achieve, I reckon you're as hard as a proper hard thing! These days, I've gotten over the fact I have limitations career wise because of illness, I don't see many positions for what I do being offered as part time. Don't get me wrong, it hurts, but I can't just spend day after day hurting can I? There are days where it hurts a lot, those are the days where I'll keep myself to myself and will stay at home. It's not giving in, just time to remind yourself it's ok and everything will work out fine.
As I get older, people naturally get on with different events in their lives. I would love my life not to be a massive drama however, it's not like my illness will ever go away (despite the DWP listing my condition as one that may improve - clearly there are some secrets about brain transplants myself and my neurosurgeons don't know about). Holidays are planned around hospitals and how much insurance will be. Having children involves 3 different consultants, none of which relate to babies. Life will always be one big (planned) drama! I kind of thought I was ok with this but then I hit 30 and panicked! Being ill is much easier up until you're 30...
I think having to plan everything so much has done two things...
1. I am a very good and thorough planner and event manager - it's put me in good stead for my career!
2. Made me regimental. I like things done the right way. I want to trust in karma and hope that one day it'll show up!
The latter of these points is the one I think has a negative effect on my life. Similar to the 'why me' question, it makes you feel like you're being punished and you want horrid things to all the not very nice people in the world. This statement is my downfall. Many people living with chronic illnesses feel angry, I am one of them. I'd like to think that one day I'll feel less angry, or to perhaps accept the anger and just get over it. I know I am not alone here, I know the people who love me have felt angry but they've managed to accept it and almost put it in a box.
To be honest I think that other people and what they think has a huge impact on how I feel. There are so many misconceptions about living with an invisible illness. There are many articles about this on the internet so I don't want to just repeat what other people say but it's worth a google if you can! Just to pick some of them out which strongly relate to how I feel and live....
1. If chronically ill people are enjoying themselves then they can't feel that bad.
Really??? Are people still saying this?? I'll stay in the house every day then eh?! It's madness this! Wise up man! I've done so many things with a splitting headache, doped up on strong painkillers! I've worked with lots of bands and at festivals with a headache that would floor most people.
2. You look fine, so probably are fine.
Dear the rest of the world,
Please don't make me shave my hair off so you can all see my scars and my lovely shunt, you'd all freak out and vomit. When you ask me if I'm ok and I say 'fine thanks'. I feel you'd like me to go through my medical info for the last 7 days. Do you want to know how many painkillers I've had that week or how much sleep I've had? I don't want to bore you with complicated medical information and neurological terms! Oh, and if I'm smiling, I'm being polite, I'm putting on a brave face, I'm not without pain or anxiety.
Yours,
Nina
3. You're drinking wine so you can't be that ill.
Now I know most of you get told not to drink alcohol when taking medication, you will struggle to find a brain surgeon who will say this. To be fair, I no longer drink huge amounts of alcohol, not because a doctor or consultant told me too though, but because at the age of 30 I realised I felt better off without it! I reckon most of you would feel that way, but I'm not preaching, do what you want! Please note though, there are some medications which you absolutely should not drink with! You can generally tell by the way the doctor says to you with a look of utter shock and disgust on their face!
4. I'm strong and brave.
I'm not. I don't have any choice. You get on with it or you don't. If you don't you see the hurt and pain in your loved ones faces. When you do, you get on with it.
5. Everything will be ok.
It won't, not unless I get that brain transplant which would obviously change who I am. Things may get easier, then they'll get harder and then they'll get easier and then they'll be harder again. Honestly there are more ups and downs in chronic illness than the yoyo of the best yoyo user in the world.
I've been so sad recently, I still am. I know I've done lots and should be proud of myself but sometimes I think this is part of the problem. I one million percent agree that you bounce back when you're younger. I felt like a ninja for many many years. I think within the past few months, the lack of bounce has been apparent. I'd almost say there's no bounce at all a lot of the time...kind of like throwing an egg on the floor....you just get a splat! I feel like a splat. A massive splat at that! I've had hard times before and I know I'll come out the other side, it's just harder now I'm older.
I'm coming back to the statement I say to myself regularly...'It's not brain surgery, look at what I've achieved as an ill person', that and 'I'm one of the luckiest people in the whole world'. What a big fat lucky duck I am!
Happy days keep dreams afloat!
Until next time people of the world!
N x
