Thirteen.

Im tired. Tired of my brain. Tired of fighting it every day. Tired of it telling me i am not enough. Tired of it making me think im unlovable. Tired of it making situations worse than need be. Tired of it constantly on overdrive thinking and worrying about things outwith my control. Tired of it trying to sabotage any happiness i have in my life. Tired of it ruining my relationships with friends, family, partners. Tired of it feeling like its racing at 100mph all the time and never taking a breather to look at the scenery and take note of its surroundings. Tired of it working against me. Tired of it bringing storm clouds when they werent forecast. Tired of it making me unhappy. Tired of it working on overdrive even when its meant to be relaxing, bringing me bad nightmares that are so vivid and real that i am traumatised the following day by them. Tired of feeling like when my body goes to sleep, my brain climbs into another body and goes on adventures of horror and panic then comes back to me in time for waking up – bringing all the memories from overnight with it to haunt me through the day. I feel i am in constant battle with myself every day and it is exhausting. I want to feel normal. Like i dont have an army at war inside my head every day. That i can wake up in the morning and feel rejuvenated and relaxed. That i dont feel like there is an earthquake happening under my skin that no one else can see. I dont want to feel the sadness creeping out of my brain and running through my body, trying to escape. I want to zap all my sadness away so it cant run, cant survive, and it cant feed on me anymore and it will die. It is like a parasite – sucking all the happiness out of me and leaving me tired and defeated with nothing left. Taking all my nutrients and leaving me with nothing.

I am tired from fighting battles with myself every day. I am tired of fighting the battles.

Six.

I feel so alone inside my head. Emotionally alone. I am being dragged down into a pit of depression and i dont care enough to even try and fight back. I will let it pull me down and swallow me because i do not have the energy to try and stay above.

December. The month of festivity and cheer. Of surrounding yourself with loved ones and feeling content and blessed.
I am wrapped under my covers in my dark bedroom, swamped with darkness both inside my mind and in my physical state.

I have no income. Zero. Ziltch. My SSP finished on the 11th, even though work are trying to say it finished on the 19th November. More phonecalls to explain to people that they are calculating it wrong and how to do it correctly to ensure I get what I am entitled to.
I’m £300 short of affording my rent now without my SSP. Thats before i even manage gas, electric, my car, insurance, petrol, broadband. I cannot get my bills down any lower.
The money I am meant to get through my work – income protection insurance – denied my claim due to them not actually taking into consideration all of the information. That should have been getting paid to me since 30th october. Before my SSP ran out. Before i ended up in this situation. This has meant delays and having to write appeal letters.

I applied for two different benefits 6-8 weeks ago and now they’ve asked me to go for face to face assessments. I advised i don’t have any money to get there. I cant afford the petrol or a bus or taxi fare. I can’t get help with transport costs until i have been accepted for the benefit. The chance of that happening first time is very slim. I will need to appeal the decision and ask for a mandatory reconsideration. Further delays in getting any help with my income.

If i had been accepted by now, i would be getting cold weather payments for the last week of sub-zero temperatures to help with my heating costs. But i havent so i cant afford to turn my heating on. I will stay under my covers instead. Did you know that the medication I’m on for my IIH is a diuretic? That IIH is a neurological condition? That people who have neurological conditions or who are on diuretics suffer more in the cold and struggle to keep warm? Maybe i should get my hat and gloves whilst i stay in bed.

Christmas. The time of year to be with the ones that you love. I can’t get there. I have no money for travel expenses. I very much doubt anyone will come and visit me. I dont have any money to get a nice christmas dinner or a nice cosy house.

How am i meant to keep my head above ground when this is my reality? How am i meant to keep fighting when all my energy gets used up trying to just keep myself alive?
I am now having to cancel my hospital appointments as i cannot afford to get to them. That’s not going to improve my situation in any way.
What am i meant to do? For now i will bury myself in my depression and try to find hope.

W.♡

Five.

A friend asked me yesterday how i am doing. I still do not know how to answer this question. Do i say i am good even though its a lie? Should i be honest and say im having a difficult time? I have always been good at keeping my mask on, even before my diagnosis. Has this made it worse in the long run? That everyone around me expects me to be happy and well all the time? What if part of my healing is to get rid of the mask and be honest with myself and them around me?

I am having a difficult time. When i speak to the doctors they increase my anti-depressants to help me cope, but that doesnt fix the root issue. I’m currently seeing a counsellor about trying to come to terms with how my life has changed due to my illness and try and accept it and move on with my life. They explained its a grief process of the person i used to be and that it is okay to feel sad about it. When people try to tell me to find the positives in life and that i should be thankful it wasn’t a worse outcome I feel angry. As i said in my last post I feel like my legs have been cut off and no one can see it. When i get told “to be thankful it wasn’t worse” i feel like i am being told “well you’ve lost both your legs but atleast you’re not dead”. This does not help me. It’s hard when nothing is getting better. Every day i just get a bit better at tolerating the daily pain and the daily challenges. Its just ‘same shit different day’ all the time. People dont like to hear negative thoughts so i try to not share how i honestly feel with anyone because I do not want to hear the whole “stay positive, things will get better, negative thoughts means negative life” shit.

So what do i do? I isolate myself. Then i feel lonely. Its hard cause some days i just cant find the energy to let people come and visit me and talk to them and try and act happy cause inside I’d much rather just lie in bed in the dark by myself and sleep.

I was told yesterday from my sister that someone who is a mutual friend of ours told her that i shouldn’t post stuff to my facebook about how im feeling or whats going on cause it looks like im looking for sympathy. This really hurt me. I try to keep any posts about IIH or anxiety and depression to a minimum but of course im gonna put stuff on my facebook about whats going on with my life. It’s not for sympathy – its cause its been life changing for me and im trying to deal with it the best i can. If i find an article that explains something well im gonna post it, not just for me but for anyone else having a hard time. I didn’t think anyone i know could be so insensitive and have no compassion towards such a sensitive subject. No wonder there is so much stigma around mental health when you are made to feel so belittled for posting articles which hit the nail on the head with how you feel. No wonder people who, after someone they knew commit suicide, they question why they didn’t see it coming or had no idea how low they were feeling. Its because of this god damn reason of people making you feel like you should not talk about it. I will not delete this person or any others off my facebook because it is not my problem. Its theirs. And if they don’t agree with ending the stigma attached to talking about mental health then they can delete me because i refuse to bow down to what they expect me or anybody else to conform to what they think should be acceptable to talk about on my personal facebook page.

W.♡

Four.

A friend on facebook wrote some beautiful words to me today. I have not seen her in about 10 years and we aren’t very close but she has made my heart swell. Below is the comment she wrote me:

“Think of the amount of people you’ve brought together. You were the catalyst to the start of my independence; you gave me friends and day trips, you gave me adventure and rebellion. You have touched so many lives it’s unreal and I know everyone who has met you can’t believe how wonderful you are. Thank you for being in my life you beautiful soul.”

I replied back stating i feel very lonely and slightly forgotten about which was ironic considering her words. Her following comment is below:

“You can never be alone when you’re loved like you are. I’m also very lonely. Not just because I don’t have many tangible connections anymore but because I find it really hard to make friends since becoming a mother and having a physical and mental disability has been challenging to come to terms with. I try to ignore it and I don’t know how to talk about it. How are you getting on? Is your health picking up a little at least?”.

I am currently overwhelmed with feelings of love and sadness at the same time. I also have physical and mental disabilities which im finding it very hard to accept. Mentally i have known for a long time i have issues but im only seeking the proper help now which is emotionally exhausting and very challenging but i accept i need to do it to heal.

Physically i cant accept it. Intracranial Hypertension is an invisbile disability so even i myself find it hard to accept i have a disability now cause i cant see it with my own eyes like when i had crutches. I dont want to accept i have a condition thats gonna be with me for life and i cant talk about it without getting upset because its affecting my life so much. I feel trapped in my own body and nobody understands. I feel like i cant talk about it cause people then think im looking for sympathy or being self pitying so i end up just not talking about it, but it is like i have had my legs amputated off its just that no one can see. To me i have this massive loss i have to come to terms with. I am struggling and i am helpless. My physical health is affecting my mental health and i dont know what to do except try and not let my sadness make its way to the surface. I feel lost inside my own mind.

W.♡

Two.

Today i feel like crying. I dont have a specific reason why, nothing has plucked my heartstrings or upset me. But i can feel it. The lump in my throat, like a bubble of emotions trying to escape that i keep swallowing to stop from coming out, for fear of how it will sound. The prickly, tingly feeling i get in the tip of my nose, warning me that tears are about to overflow their dam. My body knows by now that once that dam has burst its banks, it will leak for the rest of the day.

Its tiring being emotional. Its tiring trying to resist giving in to my body and letting myself shed these tears, as i know it may cleanse my soul but i will feel even more emotionally drained afterwards than i do just now. Its a battle every day. Will i use more energy holding up the wall to protect my village from flooding or should i let my village flood and use my energy to repair the damage afterwards? What is the better choice in the long run?

I seem to be much more emotional these days than i used to be, which is saying something as i have always been very empathetic and sensitive, but since my diagnosis and the daily use of multiple types of medication to manage it, it seems to be a daily occurrence that something makes me cry – good or sad tears. I am unsure if it’s a symptom of my condition or a side effect from the medication, all i know is that its tiring.

W.♡

One.

Why did i decide to start a blog?

I was recently diagnosed with IIH (Idiopathic Intracranial Hypertension) and i have decided to start a blog to have a place to write down my feelings and hopefully help others in my situation not feel alone in their journey. I also suffer with depression and anxiety and I am currently attending sessions with a clinical psychologist therefore feel like this is a good way of helping make sense of the emotions I am feeling.

I have currently been signed off work going on three months now and to help pass the time with my recovery i have been enjoying cooking and baking (my profession for 6 years which i gave up in 2015 to follow a different career path) and small decorative home improvements.

In my blog i plan on sharing small pieces of writing about my diagnosis, how i am feeling, what i have been doing, personal accomplishments and anything else i feel i want to share.

Peace and love,

W.♡