I’m sorry but I disagree.

I disagree with the statement that pushing through the pain is possible for me, that I should just go about a ‘normal’ life like someone who doesn’t have chronic pain and live despite my chronic pain. That I should be able to ignore it, that after 7 years of it I should be use to it and therefore it shouldn’t bother me. I disagree with the statement that just because I can do things like exercise or pop out to the shops means I could work a full time job, I’m sorry but you don’t quite understand.

See I try so god damn hard to function as much as I can despite my pain, but when I try to do normal things like study or work my pain has a tantrum like a two year old that’s hungry, actually that’s not entirely accurate as it lasts way longer than a two year olds tantrum. My pain revolts, it gets so angry I’m left in more agony than normal and completely bed/sofa bound for what could be weeks on end. So when people say I should plan for the future or I should push through the pain it actually makes me really angry as I really don’t get how I can. I’ve tried so many times, I take one step forward into the real outside world trying to be a normal functioning member of society but soon after I am catapulted two steps back into my bed with pain levels through the roof. And when my pain is that bad there’s no hope in hell that I can function.

So my question is, if my pain does that when I try to do something how on earth am I meant to push through the pain and be a normal member of society despite my chronic pain? Because I really don’t understand how that is possible.

 

A bit of a set back.

It’s been a couple of weeks since my last post where I wrote that surgery was imminent. Unfortunately that hasn’t been the case and there has been a slight set back. I had my psych evaluation with a very nice psychologist, who although didn’t know an awful lot about headache conditions, he was willing to learn and was understanding. So he can go on my list of nice psychologists/doctors. The evaluation itself went okay and he said he is not a gatekeeper as to whether or not I get surgery, that that is mine and my doctors decision, but he just wants to make sure I have appropriate care throughout the process. He wanted to go away have a think and read some reports from my previous psychologists before seeing me again in two weeks time.

Two weeks time was Tuesday so I trekked up to London to see the psych and my neurologist, I saw them briefly and then they went to have a meeting with the head of the psychology department to see what support they can offer me. The result of that was they can offer me one session with the psychologist before surgery and four after surgery, in the hope that once four sessions are up the service for the surgery I am having will be completely sorted out and they will have their own psychologist specially for this. However they said before I have surgery they want me to see their psychiatrist, and this is a 2-3 month wait to see him; and there’s the set back. I don’t really understand why I have to see a psychiatrist, my thinking about it would be their concerns that I could be a risk due to my history of self harm and suicidal tendencies. I would be lying if I didn’t say I was annoyed about this slight set back. I feel that I was kind of led to believe surgery was much sooner than the current time schedule I am now on with having to wait to see this psychiatrist.

This week has not been good, I officially resigned from work, I had my hours cut because it was just triggering insane pain levels constantly. But that wasn’t enough and they couldn’t cut them anymore so I felt the right thing to do was to resign, working made the pain unbearably bad all the time and I just couldn’t continue to do it anymore. Naturally I am very upset, I cried most of the day which of course did not help my pain levels. It is hard I just feel like everything I ever try to do to move forward with my life gets crushed cause of the pain. I never manage to finish anything and it makes me feel like a complete failure. I am 22 years old, and there doesn’t seem to be anything I can do because of the pain, so what the hell am I meant to do with my life. Everyone my age is either studying or has a job and a life, then there’s me, next to no qualifications, unable to cope with studying, unable to cope with a job, so seriously what am I meant to do. I wish someone would just help me figure it all out and come up with a suggestion because I am really lost and alone.

6 years…

January is a difficult month for me to say the least. Yesterday was my headaches 6 year anniversary.Every year that goes by doesn’t get any easier and this year was no different. 6 years is a long time for anything let alone to have been in constant pain for, which takes it’s toll.
I’ve had a month off the job/apprenticeship I recently started. A combination of being really badly normal people sick and the pain flaring. So it hasn’t exactly been the greatest month anyway let alone to add in that I find January particularly difficult anyway, because of the anniversary.
I wish I was strong enough to celebrate my 6 year anniversary as surviving 6 years of chronic pain and everything that has brought, but I honestly don’t feel like celebrating my worst enemy, the thing that has caused me so much pain, misery and heartache.
So yesterday I was sad for everything I have lost, all the problems the pain has caused and all my dreams the pain has ruined. I’d like to say today I have cheered up, but it’s been just has hard.

So happy or should I say unhappy 6 year anniversary headache.

 

Trapped with no escape button.

I have been absent again; sorry for that but at the minute I am having a hard time to do anything or keep up with anything. Between my headache and the issues I have been having with my heart and not knowing what on earth I am doing with my life, I am finding it difficult to keep my head above the water, or in other terms I am slipping back into depression, yet again. Writing posts at the minute is making me emotional which I am trying to avoid, I know that often it helps int the long run but at the minute every time I try to write a blog post I end up in tears, thus making the pain worse.

I feel like every dream I have ever had has been ripped away because of my illness, and it is so difficult for me to watch everyone around me have lives, friends, education, jobs and I have none of that. My life is pain, I have no proper friends my own age, I can’t survive education, I can’t get a full time job, I can’t support myself and I don’t know if I ever will be able to. All of that just in turn makes me depressed, it makes me angry and jealous at life and everyone around me. I know that no ones life is perfect but the majority of people don’t have illness holding them back from anything and everything they want to do. All my dreams have been destroyed and I don’t know what I am doing or where I am going with my life, I feel like I have no life because well I don’t really, I’m 21 and I have pretty much zero friends my own age, I spend half my time in bed either in pain or depressed or both, and I have no direction with no indication that things will ever improve for me. I feel like I am never going to be independent, because with my pain the way it is I can’t even hope to hold down a full time job, it would be impossible, therefore I am stuck living off my parents for the foreseeable future.

I don’t think words can fully describe how stuck and trapped my illness makes me feel, how angry I am at everything, and how difficult it is to watch everyone around you move on when you are left behind and trapped in a body of pain with no escape button.

It’s difficult.

It’s been a particularly difficult couple of weeks, with heightened pain, issue’s with college and the realisation that I may not just go off to university in the way that I want to, if at all. I will be honest it has all made me down right depressed, the depression has hit me full force and I’ve fallen back into old thinking habits. It also isn’t helping at the minute that all I see when I log on to Facebook is people my age who were my friends/acquaintances in my year at school posting that they have handed in their dissertation, that they have officially finished university and can’t wait for the next chapter of their lives. And then there’s me, not even started university, not sure if I ever will get to go like I wanted and have nothing to show for the last 3 years whilst they’ve been completing university degrees. I’m not sure if I will be able to achieve what they have. I don’t feel like I’ve achieved anything or gone anywhere in the entire 5 years I’ve been sick. It just makes me so angry at the world, at my pain, at my situation, at everything. How is any of this fair? What did I do to deserve this?

Despite all this today I completed my final law assignment, well when I say completed I mean I’ve finished it other than some re writing to make sure it’s within the word limit which needs to be done once my teacher has looked over it. Hand in day and my last day of college for the year is on Wednesday, along with a careers advice appointment to discuss what my options are with everything. Hopefully the appointment will make me feel a bit clearer about everything because at the minute I just feel confused, lost and don’t know where on earth I am going.

On Friday I am off to Dubai for a week, I’m hoping it may cheer me up a bit, it’ll be nice to see my dad and sister for a while.

This flare up is getting to me.

Feeling a bit down and fed up, still in flare up pretty sure I’ve been in it the majority of March as I haven’t had many good days; well actually I’ve only had a couple, my birthday included in that. Sometimes it takes me a while to figure out I’m actually in flare up, sure I know the pain is bad and that I’m having consecutive bad days but it’s almost like if I don’t admit I’m in flare up maybe I won’t be. Probably doesn’t really make much sense, but somehow in my head it does! Thursday was the worst day, possibly one of my worst ever pain days. Since then it hasn’t been quite as bad, but not good either. When I go into flare up for a while I feel okay and able to cope, it’s only after quite a few bad days that I start to feel down, fed up again and wonder how the hell I’m going to get through more days like this.

College has been particularly difficult the past few weeks, so much so several times I’ve had to leave the lesson early and go home, or I barely manage it through the lesson and end up back in bed as soon as I’ve got home. I haven’t been able to do any work outside of college either, all my spare time recently has had to be spent mostly in bed. Taekwondo training has also taken a back burner as I haven’t felt up to going, and know if I push myself to go it will only make things worse.
Yesterday I had my psychology lesson and we were learning about depression, which was fine because I really don’t have a problem with talking about depression and such. However what does get to me is ignorant people’s opinions on the topic. Apparently according to this extremely annoying person in my class no one with depression has any empathy. This really got on my nerves, I have so much empathy yet I’ve had depression for 5 years, some of the most empathetic people I know suffer from depression. I told her I disagreed with her and that she was wrong, she insisted that she wasn’t which made me so incredibly angry that people with depression were being portrayed as having no empathy which is not true in the slightest, so I got up and left the room before I really lashed out and said something I may have regretted. Shortly after my friend came out to see if I was okay, so I had a chat with her and then shortly after we went back into the lesson, tried to put it behind me and got on with the lesson as best I could with the pain being bad.

Yesterday after getting home and waking up from a very long, deep and much needed nap I had an email waiting for me in my inbox from my law teacher with my assignment results that I had been waiting for for ages. To my complete surprise and delight I got a distinction in the research plan assignment and also a distinction in the research report assignment! Completely thrilled and definitely worth the wait. I have one more assignment in law and then that subject is done, and then I have an exam in psychology to do in June and then I’m done for the year. Bit concerned about the exam as I don’t believe I am very good in exams anymore, however I have been known to prove myself wrong so you never know! Two weeks off for Easter now, got lots of work to do and I’m hoping this flare up will calm down so I can do it, if not well I’m not sure what I will do, but at least I might have a chance to recover from this horrendous flare up without having the pressure of having to go to college for lessons.

Also booked a trip to Dubai in May, when I’m off college for a week. In hindsight it’s just before my exam so maybe not the best idea but I want to go, and I will take all my exam prep with me and do work out there so it should be okay. It also means I get to pick my sister up on her last ever day of school and see her off to her last ever prom. Oh wait, I mustn’t forget to mention I will also get to see my Dad which is always nice as well! It’s always nice to spend a bit of time in Dubai with my Dad and sister, so looking forward to that in May.

I hope this flare up dies down soon, not sure how I’m going to continue coping as the pain is so awful all of the time at the minute, really takes it’s toll, feel very down the past week ish.

Compassion.

I like to believe I’m a compassionate person, well actually I’m told fairly frequently that I am. I was told as recently as today, by someone who I love a great deal, who I respect and deeply value her opinion and the advice, help and support she gives me. I truly don’t think I would be here today without her, she has talked me round off the edge a number of times and without her I don’t know where I would be. Don’t get me wrong I’ve put in a lot of work to get here, but if I didn’t have her support I don’t think I would have ever been at this stage in my life where I feel pretty okay despite pain.

Yes I’m a compassionate person, I care deeply about other people whether they be family, friends, people I’ve only just met, or people that read my blog. I’ve only spoken to a few of you but if you read my blog then you must have found it for a reason, you must have been searching for something most likely headache related, as that’s what my blog is about. But if you’ve been searching that means you’re looking for help, possibly guidance and most probably to help you feel a little less crazy (you’re not by the way!) and less alone. I hope reading my words help on some level, because that’s an aim. This blog isn’t purely for my own benefit but for yours too. I care deeply about helping people, and it’s what I want to do with my life eventually. I care a heck of a lot about people struggling with anything no matter how big or small it may be.

The problem is, I’m not very compassionate to myself, like at all. I’m just not very nice to myself, I say things to myself I wouldn’t even dream to say to someone else, so why do I tell myself these things, say these not very nice things to myself? What does it achieve? Well the answer is anxiety, anger, disappointment in myself, all negative emotions that aren’t good for my journey with acceptance.

The lovely woman who told me yet again today that I’m very compassionate has also often told me that I’m not very nice to myself and compassionate towards myself. My psychologist has noticed it as well and says I need to develop my inner compassionate mind. When I last saw her she sent me some recordings that will help me develop it more and be maybe just a little nicer to myself. So self-compassion is something I am working on.

I feel like this is probably a problem for a lot of people in chronic pain, are you self-compassionate? Or are you like me who tells myself things like I’m rubbish, no good at anything, can’t achieve anything, that I’m stupid, that I’m unworthy, that I deserve pain when in fact I’m not any those things at all. I am good at things, I can achieve things, I’m not stupid and I don’t deserve pain; however that is what I’ve got and I’m learning to accept that. I have high expectations of myself and am a bit of a perfectionist, nothing I ever do is good enough for my standards and it’s a bit of a problem. Even if I achieve something there is always a voice in the back of my head that I should have done better than I did and that voice needs to go.

I know I need to be more self-compassionate but I’ve recognised that I need to improve on this area of my life so now I can begin to take control over it.