Invisible Illness.

I’m really annoyed and upset. Like, seriously. I’ve had a long day today, I worked 9-3 then nipped home for half an hour and came back out to see some friends. I’m exhausted. Really unbelievably exhausted. To the point where I can barely hold myself up. I left early and went to the bus stop to wait for my bus. I had a twenty minute wait. Now, standing for this long is usually easy for a regular person. When you’re battling ME…not so much. I found a small ledge by the bus stop and plonked myself down, it was either that or I was going to fall down. As I did so, a middle aged woman gave me a look of disgust and shook her head. It took every fragile bone in my body not to confront her. She walked past and to be honest, I got quite upset. So there I was, teary, exhausted and sat on a ledge in the middle of Leeds. It was at this point I started realising how much of a mess the world is in.

I have an invisible illness and as the name suggests, it’s invisible. You can’t see it. You don’t know its there. I mean, most people don’t even know it exists. This really gets to me. I’ve been on buses where I’ve had to stand for half an hour because all the seats are gone. I’ve seen people give up their seats to able and active senior citizens. What about me? I was clearly in pain. What? Because I’m young I’m fine? No. Nobody seems to understand what I go through on a day to day basis. Nobody cares. If somebody has a visible illness, it’s real to people. They can see it, it’s there. I can guarantee that I struggle just as much as they do, I’m in pain 24/7. Yet because I can’t prove it or show anyone, I’m lying.

The new manager at work told my colleague that I was flaky. Thankfully my colleague is a good friend and understands what I deal with. She shot her straight down.

“Actually, hang on a minute, this girl is 21 years old and has ME. She has worked 10am-6pm for over a month for us and it’s almost killed her. Yet, here she is, still working for you and coming in on what she thought was her week off.”

That made me livid. How dare she say I’m flaky. I shouldn’t have even been working full time. I went from 8 months off because of illness to full time almost instantly and was always on time and always working to my best standard. That’s incredible.

I don’t really know where I’m going with this post as I’m angry, upset and on a bus. I’m in pain. Everything hurts and I can barely move.

I’ll make a better post soon. Just needed to vent.

Love you all x

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My Battle with Anxiety.

Tonight’s topic is rather a deep but important one. I don’t really talk about anxiety that often, even with close friends. Prepare yourself for a lengthy and emotional roller coaster.

I never really understood anxiety or what it was until I was diagnosed with ME/CFS (scientifically known as myalgic encephalomyelitis, just in case you were interested). It’ll be a year on May 31st that I was diagnosed. I’ve told a lot of people about my experience with living with ME, I just rarely add in the fact that it’s fuelled by extreme anxiety.

I’m going to give you a brief background on my struggle with ME, understanding how long I’ve dealt with things will help.
I was diagnosed on May 31st 2015. It took 3 whole years for me to get a diagnosis. I was constantly at the doctors and being told it could be various other things. The first visit, I was told that I was anaemic and that’s why I was tired, they put me on iron tablets for a few months before another blood test. I went back and said that nothing had changed, I felt no different and I still slept all the time. The same doctor decided I should never have been on iron tablets because my iron levels weren’t that bad (fantastic doctor right?). He made a decision to put me on anti depressants and claimed that was the reason for my exhaustion. A good few months later and there was still no change, I was getting absolutely fed up of it all. I gave up on going to the doctors. I was in college at this point and I had numerous people saying I was ‘just lazy’. It actually got to the point that my then boyfriend starting saying I was lazy and a hypochondriac. That struck a nerve. I was furious. Yet, I started to believe it myself. I convinced myself it was all in my head. It got to the point where I had to give in and go back to the doctors. This time, I had an appointment with a different doctor. I took my mum and in we went to see her. I mentioned all my past history and she had a quick look over my notes. Straight away she said “I’m going to refer you to the CFS/ME department at Seacroft hopsital, I can’t make an official diagnosis but I’m certain it’s this”. Finally. After 3 agonizing years, I was getting somewhere. I went to my appointment at Seacroft which went okay I guess. I got my official diagnosis and a huge amount of paper to read through. They sent a letter to my GP and sent a copy to me.

This is where I realised just how bad my anxiety was. The key points in the letter were these:

  • She states she has researched CFS/ME and feels her symptoms fit. Vee stated she attended the serice in the hope to “figure out what is wrong with me”.
  • Vee was informed her symptoms appear characteristic and meet the Fukuda criteria for CFS/Me, but it was acknowledged her on-going social anxiety and possible de-conditioning could also contribute to her symptoms.
  • It was noted at referral Vee’s ferritin (iron) levels were 12. Research suggests people with CFS/ME feel better with levels of 50 and above. 
  • Vee scored 14 for anxiety on the HAD scale which is clinically significant. Due to Vee’s anxiety not being addressed previously, it would be advisable to consider referring Vee to your local services for anxiety management in the meantime.

I read the letter again and again. Was I really that bad? Apparently so.

I was referred to Jessie at a more local hospital. She was fantastic. I loved her. We had I think around 5 sessions? It may sound like a decent amount but there’s so much to go through.

  • The Worry Tree
  • Sleep Hygiene
  • Thought Diaries (these were and are extremely helpful in a moment of panic)
  • Relaxation Techniques
  • Panic Attacks
  • Anxiety Maintenance
  • Unhelpful Thinking Habits
  • Physical Symptoms of Anxiety
  • The ‘Five Areas’ Model

At the time, all these things helped. It was a therapy style called CBT (cognitive behavioural therapy), we were essentially changing the way my brain works or at least trying to. I felt good for a while, I had my therapy every two weeks and used all my techniques in between. It got to my final session and we worked out a future plan for me and said our goodbyes. I was terrified to be going back into the world without the safety and comfort of Jessie.

We talked about triggers of my anxiety in therapy. We worked our way through them and how I can deal with them. Things were much better at home and I was dealing really well. Soon after I finished therapy, certain things in my personal life changed and I was back where I started, if not worse. I was in a really bad place. I’d lost my job, split up with my boyfriend, my parents were verging on splitting up and I was just ill. That’s the only way I can explain it. I was mentally ill. I didn’t want to accept it though so I continued as I was. I started drinking more. I just loved how drinking made everything disappear and made me feel numb. I kept drinking.  That’s when I knew I was bad. I’d hit rock bottom. I’d hurt people and basically messed my life up.

I guess I haven’t really talked about my actual anxiety yet, I guess I’ll just list stuff. I like lists.

  • I enjoy debating things with people. If I have an opinion on a topic of conversation, I keep my mouth shut to avoid confrontation.
  • hate travelling. What happens if I get off at the wrong stop? What if I don’t know where I’m going? What if someone sits next to me? What if I look like an idiot? What if people can tell I’m uncomfortable? What if I need the bathroom? What if I forget something? What if I don’t have the right ticket? What if my friend isn’t there waiting for me? What if someone speaks to me? What if I embarrass myself?
  • I don’t knock on people’s doors. I have to ring them and make sure they’re in and get them to come open the door for fear of somebody else coming to the door or having the wrong house.
  • I almost have a panic attack when I have to phone someone I’m not used to speaking to.
  • If I’m going to see someone about something specific, I memorise what I’m going to say so that I don’t mess up.
  • I do not do confrontation. I have a need to please people. If someone confronts me, I can’t get my words out and sit there in silence which makes them more mad. That then makes me more mad at myself and more upset so I just cry.
  • I fidget a lot, those close to me will know this. I have this weird feeling that if I’m sat with my hands still, I’ll look strange.
  • I won’t walk into a room full of people on my own. If I’m with somebody, I’ll make them go in first.
  • If I’m sat in a room full of people, I won’t move. I won’t get up and go somewhere on my own. I have to get up with somebody else. It doesn’t matter if I really need a wee, I just won’t do it.
  • I used to be afraid of getting off the bus. I used to hate buses home from school. I didn’t dare move from fear of being judged. It got to the point where I wouldn’t even get a bottle of water out of my bag to have a drink. I just sat there perfectly still. I used to panic when it got to my stop. I thought of ways that I could avoid it.
  • Going back to the hands thing, this is why I prefer long sleeved tops. I like to be able to hide my hands. It’s comforting.
  • I have a fear that I’m always breathing too loudly. Same goes for eating. I don’t like eating in public.
  • If I’m insanely nervous or anxious, I actually smile and laugh a lot. It’s strange really.
  • I plan most things in advance. Yet I like spontaneous adventures. I like to feel prepared.
  • If something awkward happens, I think about it over and over and over again.
  • I count my money at least 3 times before I buy something.
  • I do not do eye contact. Not until recently anyway, and that’s only with one specific person.
  • I refuse to leave voice mails.
  • I prepare anything I’m going to say, if I have the chance to.
  • I rarely ask people for help.
  • I feel embarrassed all the time. Then I go red. Then I get more embarrassed and go more red.
  • I struggle making simple decisions like what to eat at a restaurant. If somebody asks me what I want to eat, I will never tell them what I actually want. I’ll just let them decide and if I don’t like the decision, I just accept it anyway.
  • I hate people paying for me.
  • I always make extreme situations in my head.
  • I hate going to meet people. Well, it’s more the first point of meeting that I hate. For example, I went to meet somebody recently and I had to get a train. Now for me, I don’t like travelling anyway so I was already anxious. It was more the matter of where will they be stood? Will I be looking round for them like an idiot? Will they judge me? What if I can’t find them? I’ll embarrass myself.
  • I get anxious about being anxious.
  • I say ‘I don’t know’ a lot because it’s a lot less embarrassing than saying what I really feel.
  • Awkward silences are hell.
  • I get upset when someone points out I’ve done something wrong, even if it’s something simple like putting too much sugar in someone’s coffee.
  • I apologise. A lot. Even if I don’t need to.

It’s strange because I sometimes come across as quite confident with new people. If I’m with people I know well, they notice it a lot more. I feel like I need to stop writing now. I need to go for a cig, drink tea and let myself calm.

“It’s like being in a cage that’s unlocked”

Update.

I’ve been reading over some of my thought diaries and felt like I could include them here. I’ll explain them first so they’re easier to understand. You begin with the activating event, which may include an actual event, a thought, mental picture or physical trigger. After this, you move down the page to consequences. This is a list you create of words that describe how you feel, underlining the one that is most associated with the activating event and rate the intensity 0 to 100. You then go to beliefs. Listing all the self-statements that link to activating events and consequences. Asking yourself what you were thinking, what you were saying to yourself and what was going through your head at the time. You find the most distressing thought, underline this and rate your belief of it 0 to 100. The next part to this is recognising the unhelpful thinking styles. I’ll explain these as we go along. The next side of the page is detective work and disputation. The first being detective work. You write down your ‘hot thought’ and write the factual evidence for and against it. For disputation, you ask yourself the following questions;

  • What other ways are there of viewing the situation?
  • If I were not feeling this way, how would I view the situation?
  • Realistically what is that likelihood of this happening?
  • How might someone else view the situation?
  • Does it really help to think this way?
  • Think of some helpful self-statements.

You then move on to the end result. The aim is to find a balanced thought. You replace the hot thought with a helpful, balanced thought/s. After you have done this, you re-rate the emotion that you underlined in consequences from 0 to 100. Finally you re-rate your hot thought and how much you believe it 0 to 100. The aim is to basically calm your anxieties and make you realise that it’s not something to worry about. Here are a few of mine;

Activating Event – First day of training for work.
Consequences – Anxious, scared, worried, excited and nervous (intensity 90)
Beliefs –I am going to mess up. I’d make a fool of myself. I’m going to be say on my own (intensity 70)
Unhelpful Thinking Styles
Catastrophising which is imaging and believing that the worst possible thing will happen.
Mental filter which is when we notice only what the filter allows us to notice, and we dismiss anything that doesn’t fit. Like looking through dark blinkers or ‘gloomy specs’, or only catching the negative stuff in our ‘kitchen strainers’ whilst anything more positive or realistic is being dismissed.
Prediction and believing we know what’s going to happen in the future.
Critical self which is putting ourselves down, self-critisim, blaming ourselves for events or sitatuations that are not our responsibility.
My HOT thought: I’m going to be on my own.
Factual Evidence FOR: I don’t know anybody. I keep myself to myself.
Factual Evidence AGAINST: Everyone will feel the same. We will get on because we’re all new and with each other all week.
Disputation: If I wasn’t nervous, I wouldn’t have worried. It’s very unlikely to happen and if it does, it’s not the end of the world. It’s unlikely as I personally wouldn’t let somebody sit alone, so why would they? Everyone feels like that on the first day.
End Result: My balanced thought was now ‘I’ll be okay, even if I sit alone. Things will be fine and nobody will judge me’. My intensity for nervous had now gone from 90 to 20. I re-rated my belief of my hot thought which went from 70 to 50.

I think this is the only one I shall share with you but it gives you an understanding of how they work and how helpful they are. I’m starting to feel a lot better than I was a few weeks ago. I’m coping now. I have a fantastic person in my life that I feel comfortable with. I feel safe and I feel secure. I must admit, I was extremely nervous posting this because I wasn’t sure how he would deal with how messed up I am. A lot of previous partners have struggled to deal with it. Even I struggle to deal with it. You get to a point where you start asking why this had to happen to you. Will it ever get better? Who knows. I certainly don’t. I feel like when I enter peoples lives, I’m a burden on them. I don’t want them to feel like they have to look after me and deal with everything I deal with. I don’t want them to feel like they’re looking after me like I’m a child. I just hate it. I hate all of it. I wish it would go away, forever.

 

Enjoy these images that will sum it up better than my words ever will.

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I relate to this one the most….

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