Tuesday, 2 July 2019

Connecting the Dots: Counselling Session 8

(TW: Abortion discussion)

This session, I told my counsellor how I'd been feeling very overwhelmed with everything. She asked me to embellish, and I said how a lot of it was due to triggering news and discussions, as well as bad political news items. I read up on this because I'm interested in it, but it does get me down; especially when it seems that a lot is going wrong in the country or the world. I've also found it hard to reply to private messages from friends, due to being so overwhelmed. As much as I love talking to friends, it can be a draining process when there's lots of messages, and/or long messages. I think about what I need to do in order to reply. It includes:

  1. Reading the message
  2. Processing each point made
  3. Thinking about what to reply with
  4. Writing it out, while re reading parts of the message received so I don't miss anything out
  5. Reading through my reply to make sure I've written it properly and the tone is alright
  6. Sending the message
  7. Waiting for a reply
  8. Go back to step 1 and repeat
Eventually, I have to distract myself from messages and reply again in a day or two (or a week or two if I forget!). I feel bad for ignoring my friends, but I literally don't have the energy for long conversations anymore. 

As for the triggering news, a lot of it was about abortion, and a certain politician's views on it. I just can't seem to cope with other people's opinions on this topic. Whenever there's a negative view towards it, I take it so personally, and it brings me right back to my own traumatic experience. It took a while for me to realise this was a trauma for me, and I haven't processed what happened, and my feelings about it properly. The way I was treated was in a cold, uncaring, judgmental way. I didn't feel supported by the medical professionals I was under the care of. I was not offered the counselling I so desperately needed after it was over. I just had to get on with life at university as if nothing had happened. I remember feeling so numb sometimes, and so low other times. I would spend time with my then partner (the one who turned out to be abusive) in silence. I know it affected him too, even though he wasn't the father. Nowadays, discussion (or even mention) of abortion makes me panic, feel scared (as if I'm in danger), very low, guilty, I have graphic mental images of the abortion itself, I can even feel the physical pain I was in. I think I do actually have flashbacks now.

I certainly wasn't as fluent in talking about the abortion face to face, as I am, writing it now. I can sort of disconnect when I'm the one talking about it. It's almost as if I'm talking about a character in a book; not myself. Face to face, talking it through with another person, and hearing their views on my experiences, is different though. As I tried my best to talk through what happened and how I felt, as well as the feelings and mental images I have when experiencing flashbacks, I began to feel breathless and panicky. I also became dizzy and struggled to pronounce words. Every time I said a long word, I kept repeating it, and saying to the counsellor that I wasn't sure if I'd pronounced it properly. It was all very weird. I felt very weird, and it took a little while for me to get to a point where I could talk about other things.

The bad news around the country and the world fed into my low mood. I felt as if everything was going wrong. I catastrophised things and felt hopeless about it all. I wanted to help people, but with situations in the country being so bad, I didn't know if I would be able to do it. 

After listening to all of this, my counsellor said we should do an exercise. She handed me a sheet of paper, and asked me to write "Low Mood" in the middle of it. I was then asked to draw a spider diagram; writing the things that related to this feeling, or happened to lead to it etc. The things I wrote included the following:

  • Abortion - Not processing what happened properly. Feeling trauma, panic, shame, guilt and loss. Complex thoughts around the foetus; thanks to pro life/anti choice opinions. Worrying about this being a loss, and I might never have a chance to have a baby again
  • Low self esteem 
  • Bullying
  • Frustration with myself - not being able to fully control my mental health
  • Feeling I'm lacking a sense of purpose
  • Using therapeutic techniques, but them not working
  • Wanting to control things, e.g. my own mental health
I explained each of these things, as I wrote them down. A running theme seemed to be wanting to control things. We then went onto another exercise. This time, I would draw a sort of timeline, with the word "Control" in the middle, things that fed into or led to the need for control, along the left hand side of the timeline, and pros and cons of having control, on the right hand side. 

Left Hand Side:
  • My early beliefs about the world, and people. I'd been taught that if I was nice to people, they'd be nice back. If I helped people, they would do the same for me. 
  • When I was bullied, I found that the bullies acted in a way that I didn't expect, so this threw me off. I wasn't prepared for this, so I had no idea how to respond.
  • After a long time being bullied, I began to wonder if I even deserved to feel good and have people being nice to me. After all, these people had been horrible, so surely they wouldn't do that if I didn't deserve it? (Remember, these were my early views, I know the world doesn't work like this now)
  • Because of all this, I began to want to know what would happen next, in situations, conversations, people bullying me etc.
  • I wanted to predict the future, and read people's minds, so I knew how to respond.
  • I felt helpless, weak, useless, like a failure, like I would humiliate myself
  • So in order to fix this, I needed to gain control.
Right Hand Side:

  • Control would lead to reassurance, certainty, feeling strong, knowing how to respond to situations and people. 
As for the negative side to gaining control, this will be discussed in my next session. My counsellor told me that there were only 4 sessions left, so to be aware of that. We discussed what I wanted to do next. I said that counselling is helping me progress, but I need something more intense and specialist in order to focus on and hopefully process properly, the traumatic abortion that I had. I felt I needed some sort of trauma therapy or EMDR. I asked my counsellor what was available. She told me that under this mental health team, the only therapy they offer for trauma is CBT. This is something I've had before, for Depression and Generalised Anxiety Disorder. I didn't find it helpful, so I didn't feel very sure that it would help my trauma either. I told her that I'd give it another go, but only because it was that or nothing, so I'm not sure if I'm in the right frame of mind to be having it at all. 

My only other option is to consider private trauma therapy. I've looked up what's available in my area, and the prices start from around £80 for an hour's session. My only regular income is from ESA and PIP, so there is no way I could afford this, on top of all my other bills. I recently decided to set up a Ko-Fi page, which asks donors to buy "coffees" for the person whose page it is. You click on the amount of "coffees" you want to buy, and that goes directly to the person's Paypal account. I have had one donor so far, who I am so grateful to. I need to raise around £800 though, so I can get enough sessions of trauma therapy. The button that links to my page is on my blog, but I've placed the link again here in case anyone would be kind enough to donate and/or share.


Wednesday, 26 June 2019

Smear Tests - My Experience

(TW: details of a medical test)

I've been thinking about writing this blog post about my experience having a smear test. It is mostly targeted at people who are having/thinking about having their first test and they're not completely sure what to expect. There's information online about smear tests (aka Cervical Screening), on websites such as the NHS website. These tell you what one is, what it tests for, what will happen, when the results will come through, and what each result means. I do not feel by any means this blog post is something to read instead, but I find personal accounts of these tests can be a good supplement to "official" information. Some of what I say will be similar to the information on websites such as the NHS, but I hope to give more of a personal touch to my account.

(Disclaimer: My experience is by no means a universal one, and I do not want to insinuate that it is. People having a smear test may have very different needs to myself, for example, due to disability. Although I am disabled, my physical difficulties do not prevent me from getting onto the couch, in the examination room, unaided. I also use the term "people" rather than "women" as there are many genders where the person may have a cervix, and I would like to be as inclusive as possible.)

Yesterday was the second time in about 6 years that I have had a smear test/cervical screening. I had finished my period the week before, but was finding that I still had pains particularly round my cervix area. It was not debilitating, but was painful enough that it stopped me in my tracks for a minute or so. Because of this, I was nervous about the test and what it might find. I'm also very self conscious about my body, so was very aware of myself when undressing my bottom half.

I only had to wait a few minutes, before being called through by the nurse. She was someone I had seen (for other reasons) a few times before, so that put me more at ease. She asked me how I'd been recently, so I mentioned the throbbing cervix pain. I found that I played it down a bit (by saying it only happened now and again) possibly due to nerves. She took note of what I said, took me seriously, and was compassionate.

She also asked me some questions about my period ( the approximate date my latest one finished, whether it was regular, how heavy the bleeding was, how bad pains were etc) as well as the contraceptive pill I was on, any side effects etc. I told her I've been on Microgynon for a while, I had no side effects, and on this pill my periods are regular and usually not too heavy. My period pain is bad, but not agonising.

The nurse explained what would happen next. I was asked to undress my bottom half, lie down on the couch, bend my knees up then out; putting the soles of my feet together. I found little difficulty with getting onto the couch, as it was at a comfortable level (around hip level). I told her my hips might sublux in this position, as they are very hypermobile, but thankfully they stayed in place. She then explained what she would do next, before inserting a speculum into my vagina and opening it slowly, in order to gain access to my cervix.

It turned out that my cervix was higher up than normal, so a longer speculum was needed. (but the nurse reassured me this was nothing to worry about). She inserted the longer speculum (after removing the shorter one of course!) before opening it and inserting a thin instrument to take a sample from around my cervix. Due to my concerns about the pain I'd experienced after my period had finished, she took a larger sample than usual. She wanted to ensure that there was enough of a sample for thorough testing, to be on the safe side.

She told me that the outer and inner parts of my vagina did not look red or sore, and she wasn't concerned about them right now, but we'd see how the results are.

I found this second test much less uncomfortable than the first test I'd had. The thing I noticed most was the insertion of the speculum. I could feel the sample being taken, but it was barely uncomfortable at all, only lasted a few seconds, and I felt no pain.

Throughout the test, the nurse checked I was feeling alright, and she explained everything she was doing. I felt very at ease to be honest. The test itself only took about 5 minutes, and the nurse checked I was alright and didn't have any concerns or questions afterwards. I was quite dizzy after standing up from lying down, so I sat down to dress, but other than that, I was ok. She also told me that there may be some light bleeding and/or mild stomach pain later that day. The results of the test will be sent to me in about 4 weeks' time. Lastly, she said that if I had any abnormal heavy bleeding, or severe pain around my stomach, vaginal etc areas, to contact the surgery straight away.

I found my experience of this test, a very positive one, with a considerate nurse. I do hope your test, (whether it's your first one or your 10th one!) goes just as well.

Tuesday, 18 June 2019

"It's a Process" : Counselling Session 7

(TW: Suicide mention, sexual assault details)

I've been extremely depressed this week, to the point of having suicidal thoughts again. Usually, the Sertraline helps calm these thoughts and urges (I'm on the highest dose, so it should be bloody doing something!), but recently, they have managed to break through. I know that there is about a 90% chance I won't actually attempt, but that's because my cat, Billie, is my safety net. He sees me as his mother, and he relies on me all of the time, so I need to be around to take care of him. In that sense, it doesn't matter how much I want to end my life, that option is not available to me.

As well as this, I told my counsellor about what happened at the pharmacy. (You can read about that here , if you want to.)

I told her how the feelings and thoughts, as well as the reactions I had were almost identical to the time I was sexually assaulted at the bus station. It was as if I was having a flashback. I knew that I was in the pharmacy, but I was taken right back to the bus station; having all the alarm-bells-ringing thoughts and feeling like everyone could see what was going on, but no one was doing anything. I felt like I was completely alone and cornered by this strange man. I felt like he could do whatever he wanted to me and I couldn't do anything about it, because I didn't feel strong enough to shout at him etc. All I could do was freeze, or flinch away, and hope the whole thing ended ASAP.

My counsellor wondered whether I could link my reactions etc to the abusive relationship I was in. After some thinking, I said I probably could. The sort of running theme was being connected with a man who felt he had some sort of ownership over my body. The abusive partner was a virgin before he met me, and he basically said that I was obligated to do things for him that he'd never experienced before. As if I was less of a person, and more of an object to fulfil his desires and need to learn about different sexual experiences. When a man treats me in this way, it makes me feel less like a person; as if my identity is either non-existent or doesn't matter to anyone (least of all, him).

I wonder whether my counsellor feels I have PTSD, as I have had traumatic things happen in my life, and the hypervigilance and flashbacks I have are very similar symptoms to what a person with PTSD would have. She asked me to talk more about the hypervigilance and flashbacks too. She seemed interested in learning more about my experiences. In our first session, she did say what I went through sounded like Post Traumatic Stress as well. Whether I pursue the diagnosis or not, I'm just not sure. Unless I can get NHS funded treatment, just having the label doesn't seem that helpful.

We then got onto the topic of identity, and how my mental health and disability blogging and advocacy, had become part of my identity. That isn't a problem in itself, it's just that my online identity, where most of my friends are, only tends to show part of me and my interests. I have occasionally let my friends and followers know about the other interests I have (gaming, cross stitch, singing, keyboard, guitar, flute, metal music, rare nights out, gigs etc) but I don't make them very apparent. I do find myself wondering how well my online friends know me as a whole person. I often see conversations between friends, about their favourite band, film, TV show, game etc and I wonder whether they know mine? I do mention things like Sims 3 (my favourite game), or share posts to do with cute animals or gothic clothing. I told my counsellor that I feel there's a lot to me, just like everyone else, but it's like I've not given myself the opportunity to express other parts of my personality, interests, and hobbies. I worry about losing part of my identity, and I am desperate to grab opportunities to express those parts. Blogging and advocacy are very important to me, but my other interests have their place too. If I spent all my time focusing on the lack of access for disabled people, in many areas of life, and the discrimination faced by people with disabilities, mental health problems etc, I don't think I would ever be happy. Regardless, I still think I don't advocate for my fellow disabled and mentally ill people enough. I want to be stronger, more assertive, more resilient against critical/abusive comments online.

I told my counsellor that I struggled to move forward in life, because of my mental and physical illnesses. I doubt myself, and I struggle to believe in my own abilities and talents. I never say "I play guitar", I say "I play guitar very badly". I still do need to improve my playing a hell of a lot, but I am still able to play, and I shouldn't put a negative spin on things.

I guess that's what Depression and Anxiety particularly do. They make you doubt yourself as a person, as well as the things you do. They enhance your perception of your faults, and minimise your perception of your abilities. It's very hard to fight against all the negative thoughts that tell you that you're failing, or not being good enough.

I'm so fed up of myself and my situation, and I want to do everything in my control to improve.

I asked my counsellor how I could move forward. I told her I was stuck, analysing my problems to a certain degree but not knowing what to do next. I told her what I tended to do in therapy, counselling etc is give the therapist as much information about me as possible, in the hopes they can take that, analyse it, and tell me what steps I need to take to feel better. My counsellor and I agreed that it's not as simple as that. She said that if she did that, and the steps I took didn't work, I'd never be able to trust her again, and the therapeutic relationship would break down.

She told me that therapy/counselling is a process. Throughout the sessions we do what we can to recognise my problems, link them to other things that've happened in my life, make connections, and then hopefully I will go away and think about these things, then come up with ideas for ways I feel ready to move forward. In a nutshell, the counsellor can't give me all the answers and steps to take, all she can do is help me to help myself.

I think these counselling sessions are making me think about the whole process in a different way. I know I'm still searching for answers, but I can't expect the counsellor/therapist/CPN/whoever to find them for me. I need to be patient with myself, and focus on my progress as well as my struggles. I can only be guided.

I'm still not entirely sure how to move forward (apart from joining a choir, or other class relevant to my interests) but I'm gathering information about myself, with the help of my counsellor. I did feel a little better when I came out of my counselling session though. I may not be able to completely control my health, but maybe I can shift my focus or include my interests a bit more, in order to improve my quality of life? I think my counsellor wants me to live in the moment, rather than worrying about the future (whether I'll get married, have children, work again etc) all the time.

My next session is in a couple of weeks, but I will try to write a different post in the meantime, so watch this space!

(I've also set up a Ko-fi page, as I'm needing money for disability based things. One big thing I need is private trauma therapy. If you like my writing and want to read more, please consider donating and I will try to write more often)


Counselling Session 6: https://www.amysmysteryillness.co.uk/2019/06/judgement-and-entitlement-counselling.html

Symptoms of PTSD:  https://www.mind.org.uk/information-support/types-of-mental-health-problems/post-traumatic-stress-disorder-ptsd/symptoms-of-ptsd/#.XQgaQLxKiM8

Amy's Ko-fi page ko-fi.com/amysmysill

Friday, 14 June 2019

Judgement and Entitlement: Counselling Session 6

(TW sexual assault)

My Depression wasn't as bad this week, but my Anxiety was pretty bad. I think this was due to some arguments my parents had been having, about moving house. We haven't found anywhere yet, but Mum doesn't feel ready. Unfortunately, Dad wants to move as soon as possible. Because of this, they argue whenever the topic arises.

I really hate arguments. They make me panic, and sometimes dissociate. When I was very young, I used to worry that my parents would divorce and I would be made to live some time in one house, and some time in another. I also used to worry about how they would be able to afford a place to live each. Nowadays, I know that they have a strong relationship and only argue as much as any other married couple would.

Raised voices make me panic too, and I'm not entirely sure why. If I remember correctly, I was shouted at my bullies, but that didn't affect me as much as being jeered at, judged, left out of play, humiliated etc. My abusive ex used to shout too, but again, that wasn't the worst thing about the things he did.

Apart from this, I had been (and still am) feeling very emotional. It's not taken much to make me cry, and things have overwhelmed me far too easily. Because of this, I've found it hard to concentrate and the only thing I've been able to focus on at least a little, is watching the "Chernobyl" series on Now TV.

We then went back to talking about my abusive ex, as well as times I have been sexually assaulted by other men. It has happened a few times, but I've not reported it for various reasons (being drunk, feeling like I led someone on etc). It has really affected my ability to trust most men. If they act in a flirty way towards me, and I don't feel attracted to them, I become hypervigilant but will find it hard to make it clear to them that I do not want anything apart from friendship. I will avoid them if they persist. Men who do not get the message make me feel unsafe. It feels as if they have no regard for consent, and will do what they want. It has even gone so far as to feel as if they feel they have ownership over women's (or people they perceive to be women, I am non binary for instance) bodies.

From there, I don't remember how we got onto this topic, but we discussed society's judgement of people who cannot work; specifically due to chronic illness/disability. I still feel as if society judges me for not working, and for claiming sickness and disability benefits. I also feel they judge how disabled or sick I really am. I get so scared about being contradictory, having a fluctuating illness, and being able to prove my disabilities.

I have said in previous blogs, and I explained to my counsellor how I think about my inability to work. I try to think of the least amount I could manage in a workplace, and the least taxing job I've had in the past. I struggle to sit up for long, concentration is a big problem, pain and fatigue (as well as dizziness when sitting for a while) affect my productivity, and I would be in agony by the end of even a part time shift working at a desk.

My illnesses fluctuate but even on my best days, I simply could not be productive throughout a shift, even with some breaks. I would have many days where I could not get to work either, because of being too exhausted, in pain, or nauseous even. I would have to call in sick so many times that I would lose my job within months. I know this because this has happened even when my illnesses weren't so bad.

And that's not to even mention my mental health problems. The OCD that makes me feel the need to control everything, know what people are thinking and gain reassurance constantly, so I can be prepared, coupled with the Generalised Anxiety that makes me worry about everything, and fixate on things to such an amount that I cannot focus on anything else, finally, the Depression and BPD that affect my moods vastly, that zap my motivation and either slow me right down, or make me so agitated I cannot concentrate.

Even in my blog posts, I feel the need to justify why I am not working. People may assume I do nothing with my day, but that is not true. I try to socialise, clean when I'm able, bake on very rare occasions. The rest of the time, I am managing my illnesses. Managing chronic physical and mental illnesses is a full time job. You have to balance exerting yourself, with resting. You have to pace everything you do. If you move too much, it flares up various symptoms. If you don't move enough, your joints stiffen and your mood is affected. You have to do something each day to feel some sense of purpose and achievement, but not put too much pressure on yourself as it will make you feel mentally and physically drained and overwhelmed. You have to try and attend every appointment, ordering prescriptions, collecting prescriptions, chasing up test results etc. It's a lot to cope with!

This counselling session didn't include an exercise. It just involved a lot of chatting and venting. My brainfog kicked in unfortunately, and I had to keep stopping to remember what I was talking about/what my point was. I became very dizzy and fatigued towards the end too. My counsellor had to get me a glass of water, and let me rest for a few minutes before continuing. Even talking can be exhausting and overwhelming!

After my session, I had to go and collect a prescription. In the pharmacy, I'd just queued up when I felt a breeze on the back of my neck. I turned round, then felt a hand on my shoulder. It was a creepy old man who was standing far too close. He apologised for accidentally blowing on my neck. He continued to touch my shoulder while saying he could see my ponytail moving in the breeze. I forgave him, smiled politely, then stepped away. I flinched until he let go of my shoulder, but he continued to stand far too close for a while, before sitting by the consultation room and staring at me. I got a really bad vibe from this man, and I actually got a flashback to a time when I was sexually assaulted by a strange middle-aged man in the bus station. I had been sitting, waiting for a bus, when I noticed this man staring at me as he approached me. He sat down next to me and told me to give him a hug. I was scared of what he'd do if I said no, so I gave him a quick hug, then tried to ignore him. He then put his hand on my leg as he told me his name was Everton and he was going to Stourbridge. I flinched away when his hand starting moving up my leg. He eventually went away, but the next day, I saw him in town. He commented on me being "sexy" and this sent a shiver down my spine. I didn't want to see him ever again.

The main points of this post are about society feeling entitled to do some things, and judgemental of people who don't do certain things (primarily, working). Consent needs to be respected much more in my opinion. It is so important and can mean the difference between someone trusting you or never again.

Friday, 31 May 2019

Society's Influences and Stigma: Counselling Session 5

(TRIGGER WARNING: Mentions of self harm and sexual assault)

Leading up to this latest session, I'd been very low, anxious, and lacking motivation. My physical health isn't great (which affects my functioning enough already) but my mental health is quite poor at the moment, and the lack of motivation that forms part of my Depression, really affects my ability to do daily tasks.

I managed to wash and dress, as well as feed myself, but this exhausts me enough. I want to be able to do more, more often, but I'm not on sufficient medication for my pain, so it becomes quite debilitating. I feel like I'm constantly having to balance looking after my mental and physical health.

Anyway, back to the counselling session. My Anxiety and Depression scores were high again, and I told my counsellor that the main things bothering me at the moment were my lack of motivation and worrying about my mum's mental health. I won't go into detail about mum, as it is her business to tell who she needs/wants to. I just want her to get the help she needs to make her life easier to cope with.

We ended up talking about all sorts of things, including how certain things that have happened affect my moods at the moment.

We did an exercise where I had to write down the big events that I think have affected my mental health. These were the termination, the bullying at school, and the abusive relationship at university. Underneath, I put the moods that have resulted from these things. Finally, I wrote down the behaviours that these things have led to. Here is what I wrote:

       Moods: Panic, Guilt, Shame, Low Mood, Anxiety
       Behaviours: Avoidance, Releasing anger by venting online, self harm to punish myself, making myself read/watch triggering things, as I feel I deserve to feel that way.

Bullying at school:
       Moods: Identity Problems, Low Mood, Low Self Esteem, Anxiety, Paranoia, Loneliness, Feeling useless.
       Behaviours: Seeking Reassurance, Avoiding Group Conversations, Self Harm when I feel myself acting like I used to, Lacking Motivation

Abusive Relationship: 
       Moods: Low Mood, Low Self Esteem, Anxiety/Panic
       Behaviours: Seeking Validation, Second Guessing Myself, Hyper-awareness, Being Suspicious of Men, Being Promiscuous in the past - seeking comfort, but with risky behaviour

The moods and behaviour from the termination are very complex and contradictory. I either avoid everything, or flood myself with everything. I show self-destructive behaviour; where I am constantly punishing myself, whether that's physically or mentally.

I'm the same with the bullying and the abusive relationship. All the comments and judgments made about me have formed part of my identity and made me feel suspicious of some people. I worry that people have ulterior motives and don't really like me/just as a friend.

I remember a time a friend of mine and I were thinking about meeting up. He'd been quite flirty and I had my guard up, so I kept putting him off. One day, when my parents were on holiday, he turned up out of the blue. Suddenly my safe place (i.e. my flat) didn't feel as safe. I let him in as I wasn't sure how he'd react if I didn't. We watched a movie together, but then he started playing with my hair. I felt like alarm bells were going in my head. I thought he'd try to have sex with me, without my explicit consent. I also worried I'd just let him because I wasn't sure what he'd do if I rejected him. As far as I was aware, he never did anything violent, but my mind instantly thought he might.

I've been sexually abused (by a stranger in a bus station) in the past, when I was a teenager. I didn't discuss this with the counsellor, but thinking back, I think this also fueled my suspicion of men who are flirty with me. If I'm not attracted to them, I find it very hard to reject them and I end up feeling violated, and disgusted in myself if anything happens.

We didn't have time to go through everything, but from what I explained to my counsellor, she spotted a pattern. I was very influenced by society's views, as well as possibly wanting to influence society with my own views. She said this was very interesting and important. This is something she wants us to discuss and unpick in subsequent sessions.

Although my moods have still been pretty awful, I'm at least feeling like I have a good therapeutic relationship with my counsellor, and it helps to talk about how I've been feeling. She gets me to explain certain things I say, gives her view when appropriate, and helps me to understand and pick up on things. I do feel positive about these sessions and I'm hoping in time I will be able to talk more freely about the things I've been through.

There's no "homework" as such, for the next session, but I am continuing my journal and at the very least, it is helping me monitor my moods and fill in the PHQ etc questionnaires.

Friday, 24 May 2019

What Influences Me? : Counselling Session 4

(mention of cancer, suicide method, and death)

At the start of this session, I wasn't sure what to talk about. Not much had happened, mental health-wise, in the last week.

I was still thinking about my old school-friend, who died recently. Although I knew we'd drifted apart, I still blamed myself for not making enough effort. I miss her to be honest. She was a good person.

I'd also had a GP appointment recently, where I was told to taper off my pain medication (Tramadol, slow release) as well as stop my anti-sickness medication. I have struggled with my pain, since lessening my dose of Tramadol, and I'm trying to live with it, but it is affecting my functioning. I want to function better but I can't keep pushing myself to my absolute limits.

As well as this, I'd had some pains around my stomach, hips, and back. The pains were like cramps and were getting to the point where I was doubled over and sweating. The GP seemed concerned about this, and suggested I might have an ovarian cyst. This played on my mind, and I got a bit of a shock when I was handed the blood form and found they were testing for cancer (I reckon ovarian cancer, but I'm not sure if they test for antibodies or something like that.) They say it's around 1 in 2 people who get cancer now, and my parents haven't had it so far, so maybe I won't be so lucky? I'm trying not to think this way, but I can't help worrying this may be a possibility. Even if it's not cancer, any kind of problems with my ovaries makes me scared that my fertility would be affected.

I'm nearly 30 and running out of time where my fertility is at its optimum levels. I feel as if I am running out of time to meet someone, get married, and have children. Life seems to pass by so quickly, and with the death of my friend, it seems to be getting shorter and shorter.

The counsellor seemed very sad that I was thinking this way. She asked me why I thought I wouldn't meet someone.

I said that I just don't see myself having that life, and I'm scared that nothing will change unless I change parts of myself. But how? Where do I start?

I became upset as I told her that I never felt as if I was "enough". With romantic relationships specifically, I always felt as if I was second best, last choice, or just completely unimportant, so I felt like that about myself. I wanted to feel loved, attractive, and respected. She asked me why I felt this was so important?

I said that I wanted to make some sort of difference in the world. I wanted to feel as if my life was worth something, that I was worth something. I don't want to leave this world without doing some good. She also asked me if there were people I looked up to, who had made these kinds of differences in the world. I told her that I had some friends who were very vocal about mental health, and did their best to write in order to tell the truth about mental health services these days, as well as raising awareness and breaking down stigma. They wrote for online magazines and newspapers. They had thousands of followers. I'm not too bothered about having lots of followers, but I do want my opinion to be heard, respected, and understood. I want my words to mean something to someone. I want to do something good, however I can. I wish I had the confidence to do this. I feel I'm wasting my life otherwise.

I admitted that I had done some good. I've been over the phone/text/twitter to someone who was taking an overdose. I have talked someone out of killing themself. According to some friends, my blogging has helped them, and I've helped them by being there for them when they needed it most. I just felt like I could do more, make more of a difference. Even here, I feel like I'm not doing enough, and that I myself am not enough.

After this, my counsellor suggested doing an exercise. She did suggest talking about the future, but I refused, as I was feeling so scared and down about it, that I couldn't bring myself to focus on it right now. Instead, we did more identity work.

She gave me a sheet of paper, and asked me to put myself in the middle. I drew a stick man, and wrote "me" above it. My art skills aren't great...

She then asked me to write the traits I thought I had, around the figure of myself. I struggled a bit, but managed to put things such as "stubborn, determined, wanting to control things, perfectionist, kind, friendly, a good friend, ambitious, impressionable".

We spoke about the traits I had, and I told her that control was a big part of my personality. I'm diagnosed with OCD, although I believe my symptoms are quite mild now, but I am still a real perfectionist who hates to be out of control. We also talked about my stubbornness. My counsellor asked why I thought I was stubborn. I struggled to explain, and couldn't give any specific examples, but I did tell her that when I set my mind to something, I would usually do it. I would listen to advice from others, but it was ultimately me who would make the decision.

Possibly contradictory to the stubbornness, I also felt that I was quite impressionable. If I looked up to someone, I would try to take on parts of their personality. I would also follow their advice. In the past, I would do whatever someone wanted me to do, without question. Maybe I was worried about the consequences, if I did question them? I have a feeling this is how the bullying started anyway.

Lastly, the counsellor asked me to write down people who gave or influenced these personality traits in me. I won't say specific names, but these included friends, parents, and grandparents. I could link certain things to certain people. I also found myself digressing when I talked about some of them. One was a friend of mine who hasn't spoken to me in a long time. He was someone I had a lot of history with, and still thought about recently. I believed I got my determination and ambition from him, at least in some way. I resented how he hadn't been there for me for ages, when I really needed him. I wish we hadn't complicated our friendship, but at the same time, I still have thoughts about being with him again. I wish I could switch off those feelings, but I had a dream about him recently that brought it all back. I hate how influential my dreams are.

My counsellor and I discussed how it is interesting that people can pass certain traits onto people, without intending to. It certainly made me wonder just how impressionable I am.

There was only a few minutes left of the session by that time. My counsellor summed it all up, and said that she felt I was very lonely, unsure of myself, not really feeling like myself anymore. I want to go back to how things were with some friends, and my own traits (confidence, feeling attractive etc). I doubt myself and dread the future. She asked me what I'd like to do between sessions, in order to make some sort of change in myself. I asked what I could do, but she wanted me to come up with my own suggestions, as this wasn't rigidly structured (like CBT). Eventually, she said journalling would be useful for me. I could put what's important to me, the traits I have/inherit, how I'm feeling etc.

This session brought up a lot of difficult things that I have to face. I cried as I explained how lonely I'd been feeling. It's played on my mind ever since, so found it hard to put everything down on paper.

I will probably post about how the journalling is going, so might have posts every few days. It depends on how I feel. If I don't, then the next post will be about my next ENT appointment, where I undergo Vestibular tests for dizziness and balance problems. After that, I will post about my next counselling session.

Friday, 17 May 2019

All About Identity: Counselling Session 3

TW: Mentions of abortion, weight, death, and suicide

Again, lots of things have happened recently, and I feel completely overwhelmed. If it isn't something happening in my life, with friends and/or family, it's something on the news or social media that has deeply affected me. I was definitely in need of yesterday's counselling session. She called me through to her room, and as we sat down, she went through my answers to the depression/anxiety/phobias etc questionnaires. I had lower scores on some things, and higher scores on others. She asked me what had gone on recently.

A big piece of news for me was finding out (via Facebook unfortunately) that an old schoolfriend of mine had died. Although I wouldn't call us best friends, we were friends and had known each other since Year 3 of primary school, right up until now. The news had come a little late for me, so the funeral had already passed. At first I was really shocked, and then in floods of tears. After this, I had really confused feelings about it all. The truth was, although she hadn't spoken to me in a while, I hadn't made the effort to talk to her recently either. I didn't blame her at all, but I did blame myself. I wish I had the energy to keep in contact with all my friends, but it just isn't possible. I don't want to lose any of them though, and I guess losing a friend to death has made me realise how important friendship is, how short life is, and how important it is to keep your loved ones close.

Anyway, I digress. Some really prominent feelings I had about my friend's passing were guilt, anger at myself, and regret. How dare I feel upset about someone I hadn't made the effort for? How dare I allow myself to be comforted for my loss, when others had been much better friends to her?

The counsellor seemed to find it quite sad and interesting that I had those feelings. Again, I was blaming myself for my own feelings, and thinking that I'm reacting the "wrong" way.

We then moved on to the next thing that had affected me deeply. This was the news of an abortion ban in Alabama (please Google for more info, I can't bear to read any articles on this). I tried to listen to the news item, but found myself dissociating. Nothing felt real, I felt as if I were elsewhere, I felt like someone else was moving and speaking for me. This lasted a few hours, but I did manage to function for some of it. I just felt as if I were going through the motions rather than consciously going about my day. Dissociation can have such an effect on someone, yet can be totally invisible to someone not experiencing this. Usually, I would be triggered, panicky, dizzy, nauseous, scared, suicidal, urges to self harm etc. I suppose I expected to feel that way, because being exposed to anything about abortion made me react that way usually.

The counsellor asked how I thought I should feel, and I explained this to her as fluently as I could. I was judging and criticising my own reactions to things that usually affect me deeply. I said that I would like to get to a point where my reactions, feelings, thoughts etc weren't so extreme. I wanted to just feel upset and angry at the news, but not to a point where I couldn't focus on other things. I want to feel things the "normal" not "extreme" amount.

We talked a bit more about how I judge my own emotions and reactions, and she asked where I think this judgment stemmed from. I told her about the bullying I experienced from the start of primary school, right until the end of secondary school. I've said it in previous posts, but this bullying was mostly psychological, and involved everything I said, did, thought, wore, looked like, being judged. Before all this, I wasn't that aware of myself, and so didn't feel critical of certain aspects of myself.

I said that these judgments seemed to seep into my own identity, and I have very critical views of myself. I worry about everything I say, I wonder whether I'm doing things "correctly". I pay careful attention to what I wear, I use makeup to enhance what I do like, and conceal what I don't, I second guess my beliefs. I believe everything about myself to be wrong and not enough for acceptance.

My counsellor asked if I react extremely to anything else. I said I tend to get very worried about relationships and friends. I'm a people pleaser, but I never feel worthy enough for my partner at the time, or my friends.

I remember when something happened to a couple of my close friends online. They believed it was one person at fault, that they both knew. Although I would never do what this person did, I immediately felt guilty and scared that they would think it was me. I got so worked up about this, that I ended up messaging one of them. I then felt scared about doing that, because I thought that only a guilty person would deny doing something.

I get so scared about being judged for things I'm not/haven't done.

We then spoke about identity. How do I form my own identity? Where do my beliefs about myself stem from? Again, it was school. The comments from bullies became so ingrained that I believed them about myself. Even the odd positive (or perceived positive) comment would become part of my identity. At school, I was always complimented on how slim I was. I was told this so much that I took on this identity of the slim friend. Although I worried about everything else, I could eat anything and stay slim, so I didn't worry about my body (apart from my small boobs).

When I had my longest relationship, my partner used to talk about weight a lot; specifically the fact that his ex girlfriend had put on a lot of weight since they broke up. It made me more aware of my own weight. I remember asking him if my weight gain showed. He told me not to worry now, but if I got fat, he would drop hints about going to the gym. At the time, I thought being fat was a thing to feel bad about and do something about, so I didn't see how problematic his views were.

After we broke up, I became very depressed and suicidal. Since then, I have put on a lot of weight, and now it shows, I feel terrible about myself. I also feel bad for having this reaction. I am at least slightly body positive about other people. I believe it is completely the individual's business, how much they weigh, and people should be treated with love and respect no matter how fat or thin they are. Yet I can't feel this way about myself, so am I truly body positive?

We went back to talking about relationships. I said in a lot of romantic relationships, everything seemed fine as long as I was going along with what they wanted, agreeing with their views (or at least accepting them without argument) etc. As soon as I found a problem with something they did/didn't do, or I disagreed with them, suddenly I was the bad guy. In some relationships, I was treated as if I was irrational if I couldn't find a specific example for my argument. I was also treated as if I was causing trouble, and should just let them do what they liked, and not be so "clingy" or paranoid.

I'm not usually confrontational. Counsellor asked if I'm quite laid back and passive in relationships.  I said I guess I am. I tend to let them take the lead and make the decisions. If I make decisions, disagree or try to confront, again, I'm the bad guy.

I told her I seek reassurance about everything. This stems from being judged at school when bullied. I said that I wish I could separate the things I believed (because of the bullies) from my identity. I was so dependent on others' opinions of me, when I take that all away, I don't know what I'm left with. This makes me feel lost and uncomfortable. I want to accept myself, and have a more solid idea about my own identity.

Somehow, the conversation then went on to feminism. My counsellor gave me an example of a time she reacted to something very differently to her partner, and he couldn't understand why it had affected her so much. It involved some instances of misogyny in a television programme. I won't go into all the details (mainly because I'm exhausted after typing for so long!) but it brought up many questions about what we accept, and how our proximity to certain things affects how we react.

She told me that her feminism had formed part of her identity. She then asked me to do an exercise, where I was asked to list what kind of identity I wanted to have. This is what I put:

How I want to feel

  • Accepted/accept myself
  • Respected
  • Treated with kindness, acceptance, civility, like an equal, like a human
  • Assertive
  • Attractive (physically and personality)
  • Trust myself/my own opinion
  • Self confident
  • Not too influenced
There are probably other things I could add to this, so she told me to take the list home to go over.

It was a really interesting session, where we explored how we form our identity, and my struggles with it. My entire view of myself is strongly influenced by other people, because I have been bullied and criticised for so long that I have accepted it as part of me. I struggle to trust my own judgment and constantly ask for reassurance. I am also terrified of being misjudged, but I am unhappy with my own personality. I want to find any way I can of self improving or becoming of some use in the world. 

Wednesday, 8 May 2019

How do I define myself? Counselling Session 2

My second counselling session came around at just the right time. I'd been feeling extremely low and anxious over the past couple of weeks, and although I did confide (a bit) in friends, I needed to be able to just let it all out in a therapeutic setting.

Naturally, the PHQ etc scores were very high, and my counsellor seemed concerned about this. She asked how I'd been recently, and if anything had triggered my low moods and anxiety.

I started by telling her about something that had cropped up again recently, on social media. It involved an ex friend who had set up a malicious forum to name and shame people they believed were over-exaggerating or faking their illnesses/disabilities. Of course, this caused an uproar with the online community this person was a part of. How could we trust someone who may judge us and question how disabled we really are, just based on our social media posts, hobbies etc? Everyone is different in terms of their capabilities, what debilitates them severely, moderately, mildly etc. It is not the job of a random person to decide who is disabled enough to deserve the support they get. This is probably the last time I will talk about this, as it is far too upsetting, but it was something I mentioned in my counselling session as it was a big trigger for my anxiety.

We then talked about paranoia. It's a term I use a lot to describe my feelings about certain things. I wasn't sure if my anxious feelings (about being judged for my disabilities) qualified as paranoia anymore as they were much less extreme than they used to be. At my worst, I truly believed that if there were any car or van outside my house, that I did not recognise, it would be an informant for the government, spying on my daily activities. I also felt the same about strangers I passed in the street, if they stared at me for too long, or made any odd comments. As well as this, I would be hyper aware of anything strange going on with my laptop, online accounts etc. I thought someone had taken control of my laptop, regardless of how many times I checked anti virus/anti malware/anti spyware etc programs. Although my feelings are much less extreme now, she believed that how I felt still counted as paranoia, and that this is more of a scale where you can be mildly paranoid, severely, or anything inbetween.

Next, the counsellor wanted me to do an exercise. There was a whiteboard in the room, and she drew a table with 3 columns. The first was entitled "Who I am", the second was "How others perceive me", and the third was "Who I want to be". I had to put words and phrases in each column to answer the question in the headings. At first, I found this very difficult. I didn't want to just put negative things about myself, even though I was feeling very negative and depressed at the time. With the counsellor's help, I wrote the following:

Who I am

  • Friendly
  • Caring
  • Ambitious
  • Determined
  • Strong Morals
  • Negative
  • A Worrier
  • A Perfectionist
  • Weird
  • Struggling
Whilst writing these things, I paused to think about my answers as well as how specific the header's question actually was. How do we define ourselves? Is it about who we are, and/or what we do? Should we mention academic achievements as part of our identity? How about chronic mental or physical illnesses/disabilities? I asked the counsellor this, and she found it very interesting how I analysed the question to such a degree. She asked if I felt my illnesses formed part of my identity now. I thought about this for a few seconds, before saying that yes, I did feel that way. This was partly because I'd been ill for so long, and partly because my interests in breaking down stigma to do with mental illnesses and chronic physical illnesses were so strong. I guess how I assert myself and teach people about things to do with stigma forms part of how I define myself. I feel I have to "do" something in order to be someone. I found certain things people have said about me in the past, and the way they had treated me, were so ingrained that they became how I saw myself, so words to describe this (weird, negative etc) were written in the first and second columns of the table. 

In the second column, I had to write words/phrases about "How others perceive me". I found this a little easier to fill in, because I have spent so much time focused on how I believe others perceive me. Here's what I wrote:

How others perceive me

  • Lazy
  • Defeatist
  • Negative
  • Friendly
  • Strong Morals
  • Weird
  • Incompetent
  • Stupid
  • Weak
As you can see, a lot of these descriptions are very negative and harsh. Defeatist was a word I worried that mental health staff felt towards me. They often only see my negative days; where I feel useless and deflated, as well as very pessimistic about the world in general. I speak as if I have the weight of the world on my shoulders and nothing will ever improve. I feel that they believe I have given up and have no desire to change the things I can. In truth, I'm struggling and I'm asking for help because I still have that slight bit of hope that things will get better (with the right support, for enough time). I am willing to put in the effort and commitment needed, but I need a long term type therapy that focuses on my past traumas. I am presenting my therapist, CPN etc with the feelings/symptoms I have, some mentions of diagnoses, and how my struggles affect my life, aspirations, relationships etc. This is in the hope that they will make connections with these struggles, and decide the best course of treatment/therapy for me. In reality, they may try to do this, or they will just pick out the anxiety or low mood symptoms. In terms of treatment though, my local CMHT barely have a thing they can offer me. 

"Incompetent", "Stupid", and "Weak" were descriptions I felt people have associated with me for years. I can link a lot of that to the bullying I experienced throughout Primary and Secondary School. Everything I said, did, wore, enjoyed, knew or didn't know, was judged severely. My bullies would make me feel as if I was completely wrong about everything and couldn't do anything right. I didn't fit in, I was far too polite, I cried too much, I didn't start conversations enough, I was too quiet, my nose was too bumpy, my ears stuck out too much, my makeup wasn't right. Even the way I sat was mocked! I doubted everything about myself, and even now I have to ask reassurance for certain things. Most recently, I spoke up about something and then worried that people would demand sources for my information. I worried that I would not be able to find strong enough sources and people would just put me down as a bitter and bitchy person who didn't know what they were talking about. 

Lastly, I filled in the "Who I want to be" column. I couldn't think of many things, but the following terms were included:

Who I want to be

  • Successful
  • Happy
  • Confident
  • Assertive
  • Balanced (less mood swings)
Until finding out otherwise, I tend to believe lots of friends and acquaintances fit all these descriptions, by what they say/how they express themselves online. I admit I get very jealous and compare my life to theirs. I want the Doctorate in Psychology, I want the spouse and children, I want to move out before I turn 30, I want to react to criticism in a less extreme way, I don't want to be triggered by things. I want to grasp every opportunity I get. 

Whilst speaking to my counsellor about this, we realised together that I actually blamed myself for things that were (mostly) out of my control. Of course, the termination experience came up, as my struggles around this are exactly why I sought counselling this time. Part of me regrets having the termination, as I worry this may have been my only chance to have children. I hate that I hurt my ex partner (who would've been the baby's father), even though it was my body and my choice to make. I at least told him what I'd decided to do. Even though I was only 19 at the time, I knew other friends who had managed to bring up children from a young age. I guess I thought a person was supposed to feel a certain way after a termination and I thought I had all the "wrong" feelings about it. I expected to feel relieved and able to move on after a while. Instead, the memories, mental images, conversations I had with people, the way I was treated by nurses, stuck with me. I felt that I had made the decision too hastily and almost as if I'd done it for other people rather than myself. I felt ashamed about getting pregnant so young, especially while studying and living in halls. I'd just started a new relationship and I guess I didn't want him to have to deal with my "baggage" (to put it extremely bluntly). I had all of these feelings, and worries that my thoughts about it were taboo, that I didn't know how to deal with it. So I have this huge messy knot filled with memories, images, feelings etc and I'm searching for someone who can help me unpick it and deal with what we find. I don't want to completely forget what happened, I just want to accept it and not worry so much about the future.

The hour was nearly up, so the counsellor decided we should look at the bigger picture and see how things are linked, certain things affect me and why. 

One glaringly obvious conclusion was that the way I believe others perceive me, has a big effect on my moods and therefore my mental health as a whole. I am easily triggered by things that play on my insecurities and deeply held worries. My chronic physical illnesses/disabilities are very debilitating, but the way I believe others judge me can be very debilitating too. 

The counsellor then asked how I would feel, and what I think my life would be like without the worry of people perceiving me in a certain way. I said that I couldn't even imagine this, but I think I would feel a bit more free, confident, and like I was "allowed" by society to go out of the house whenever I was having a good enough day. Maybe I could try things like a gentle form of yoga, to see if I could cope with more exercise. At the moment, the fear of someone reporting me to DWP for being too active makes me feel I can't even go for a taster session. 

I told the counsellor how I felt society thought that everyone should be in a job and that no one is truly unable to work (of course this is wrong, but this is what I believe politicians and the media have taught a lot of people). The way I am now though, I can't imagine what sort of accommodations could be put in place in order to allow me to participate in a job. My illnesses are so predictable, and I would have so many sick days that I would end up losing my job within months (or even weeks). I feel my employer would see me as far too much of a liability to keep on. I think back to how much I struggled when I did work. I had at least one sick day every month, and my pain, exhaustion etc slowed down my processing, communicating, organising information etc. I would make mistakes and need help. I couldn't learn things in 5 minutes and be at the same standard in 1 month, that someone had got to in 3 years, for example.  

Chronic illness in itself is a full time job. I'm especially feeling like it is, this month. There are many appointments with GPs, specialists, mental health professionals to go to, in order to review medication, continue therapy, have tests of various kinds etc. The times inbetween include managing daily life. This consists of making sure I sleep when I need to, I take my medication on time, I make sure to avoid any food that might flare up my symptoms, I pace what I do, but also try to get some sort of exercise, I do any therapy homework required of me, I make phonecalls to doctors etc if needs be, I try to socialise in order to tackle anxious thoughts and raise my low moods, I monitor how I feel from day to day so that I can accurately give information (at appointments) about my symptoms. I fear the future because I want more out of life, but I can't see how anything can change, unless treatments improve for example.

Overall, I found this counselling session very interesting, and it gave me opportunity to think about various things; including how I react to the things I believe are happening/may happen. I get on well with the counsellor, and feel I can confide in her. I'll keep documenting my sessions (there may be more than 10 posts on this alone)

I'm sorry this is such a long read, it was a very full on session! Thank you so much, and also well done for reading this far. I will keep you posted about my next one.

Thursday, 18 April 2019

Putting Myself First: Counselling Session 1

(Trigger Warning: Mentions of Suicide, Self Harm, and Abortion)

Today, I had my first counselling session. It was nothing like CBT or other therapies I've had before, as it didn't have a specific structure. Also, no homework! Of course, I still had to fill in the good old PHQ scale etc questionnaires. According to my counsellor, I had quite high levels of Anxiety and Depression. To be honest, with everything going on recently, I'm not surprised it's caused relapses. I don't think I'm in a very good place at the moment, but I don't think I realised this until I started talking about things and focusing on myself.

The main reason I decided to ask for counselling this time was because I needed to come to terms with the abortion I had 10 years ago. I did it because I thought I had no other choice. I was 19 and still felt like a kid. To have the responsibility of bringing up a child was far too much for me. I was only just learning to look after myself! I made the decision quickly, and felt numb sometimes, scared others, when I made the appointments, went to them, took the tablets I was given etc. The nurses were matter of fact at best, and completely judgmental and horrible at worst. It was a difficult time, and an experience I wanted to get past as soon as possible with as little people as possible knowing.

Some people were very supportive, some made me feel incredibly guilty and ashamed of what I had done. I felt I couldn't talk through it at the time, so I kept it mostly locked up inside.

I don't know when I started thinking about the termination more, or when I started to get triggered by any mention of it, but things started getting really difficult at least 10 years ago. I get just as triggered (if not more) now and I am so fed up of feeling this way. I have to leave the room or put my earphones on, when storylines or discussion of abortion are on the television. I can't properly contribute to conversations around it, whether face to face or online. Even seeing a pregnancy scan can set me off.

I've written about my feelings of being triggered before, but I'll quickly explain how I feel below:

  • At first, I feel very upset and panicky
  • I'm very likely to have bad panic attacks
  • I may get angry that someone has not considered putting a warning on their post about abortion, or a TV programme hasn't warned beforehand.
  • I may dissociate and tense up; going completely silent and being unable to concentrate on anything else
  • I will be brought right back to the time when I experienced an abortion. I can imagine the nurses, visualise the clinic full of upset women, feel the intense pain I had soon after, visualise the blood and everything that came with it.
  • I will not be able to concentrate on anything else for a while, and I will have to (maybe with some prompting) do things to ground myself or distract myself.
  • At its worst, my suicidal feelings will return and/or I will have extremely strong urges to self harm badly, as if I want to punish myself or distract myself with a pain I can control to a certain extent.
  • I may become hyper-aware and jump at loud noises etc
I said some of this to the counsellor and she told me it sounded like symptoms of Post Traumatic Stress Disorder

She can't diagnose me as such, but I did find it interesting, as I've wondered before if this is bad enough to be considered as PTSD. I don't know if I should try to get assessed for it, whether it'll result in extra support (probably not). I guess I can just say I have symptoms of PTSD rather than the full diagnosis itself. 

Whilst talking about that particular topic, I digressed and talked about when I first got ill, my abusive relationship at the time, as well as how my ex partner (who would've been the father) reacted when I'd had the termination. The conversation came round to family, friends, and childhood too, so of course the things that have happened with my Nan recently, came up, as well as my cousin. My counsellor said that I have had so much to think about, and I've been through so much, so it's no wonder I feel the way I do.

I tried to focus on this particular topic, but as I was leading the conversation (the counsellor was mainly there to listen and give me space to talk) I found I would digress a lot, go silent when I ran out of things to say or lost my train of thought, sometimes cry, apologise for rambling, and then repeat the things I said before. I don't know how much useful information the counsellor got from me, but I at least gave her lots to go through (probably too much!). I'm seeing her next, in a couple of weeks and she told me that she could help build more of a structure into our sessions if I liked. I don't want to be completely restricted, but I think I do need some prompting to keep focused on one thing at a time, so I was grateful of her offer.

For the rest of today, I've been feeling very exposed, self conscious, anxious/panicky, depressed, and overwhelmed. I keep dissociating too. I'm trying to do what self care I can, and focusing a lot on comforting myself. 

Thank you so much to my readers, it means a lot to know that people are interested in what I have to say, and support me too. I would love to be there for people who have been through similar things as myself, but I'm not able to with certain things. With the help of my counsellor, I hope to get to a point where I can. 

Thursday, 11 April 2019

An Absolute Nightmare of a Day

I'll explain.

So my Nan was in a temporary nursing home after a fall (possible TIA) and breaking her right femur. This temporary home was aiming to rehabilitate her and get her back on her feet, as physios at the hospital were unable to do so.
Her needs became greater, so we (family, social worker etc) felt a care home (with dementia specialism, as she is also being assessed for this) would now be where she needed to live. After sorting everything out, we found a really amazing place with one great room she could move into straightaway, and one even better room she could move to after a few weeks. She had made as much progress as she could at the temporary nursing home, and the end date of her contract there was soon.
My parents and I had a call from the temporary nursing home a couple of days ago. The contract had ended and Nan was to leave the next day. Bed management had booked an ambulance transfer to the new home, so all we needed to do was go to the temporary home and collect her stuff before following the ambulance to the new home. The time slot for ambulance arrival was between 11am and 1pm. Sounds pretty reasonable and relatively simple, right?
Well Dad and I made our way to the temporary nursing home yesterday morning. We arrived at 11.30am after a delay on the M6 due to a collision near the next junction after the one we were to get off at. We found my Nan had been plonked in the lounge with bags of her stuff next to her, and some cleaners in her old room. She was annoyed because they'd only told her that morning that she was leaving! She was pleased that she'd be going so soon though.
Anyway, we sat by my Nan and waited for the ambulance to arrive. 1pm came and went, so I rang my Mum to see if she could contact bed management to see if they could chase up the driver. Apparently, the time slot was actually between 11am and 3pm. More of a wait, so we weren't happy, but at least it wasn't too long. So we waited. 3pm came and went, so we spoke to one of the nurses to see if she could chase it up. She told us that ambulance transport is rarely on time, and all we could do was continue to wait
We waited another hour before ringing Mum again to see what was going on. She told us that she'd rang the temporay home and the manager would be over to speak to us as soon as possible.
The manager came at 4.30pm and said she had bad news. The cut off point for ambulance transport was 4.00pm, so we would not have any transport, and the booking hadn't been made properly, so an ambulance would never have arrived anyway! We were furious. She said she'd see what she could do. She spoke to the transfer company, and they said they could pick Nan up at 11pm that night! Of course we refused. It was far too late, and besides, the care home would not admit her that late. The manager didn't know what to do (great management, right??) and it was left to my Dad and I to figure out how we would get Nan to the home that day.
The manager told us that if we couldn't get transport, Nan would have to stay another night. Nan had already been distressed to the point of shouting and almost crying. She became angry and said there was no way she was stopping another night there at all. She'd had a terrible time there and this day was the worst day of her life. I suggested booking a wheelchair taxi, and hinted I would like the care home, bed management, or transfer company to fund this. They would not fund it, so it was down to myself and Dad to come up with the money for the 45 minute (at least) journey from temporary nursing home (in Stafford), to new care home (near Wolverhampton). The manager gave us the numbers for the only companies in Stafford that provided wheelchair taxis. I rang the first and couldn't get through after about four attempts. The second company's wheelchair taxis were all booked up for that day. The only option left (that Nan would actually agree to) would be to try and get Nan into our car, with the help of some carers. What we needed to do first though was, to get permission from the manager and physios (for health and safety reasons) and check the new care home would still admit her that day. Apparently their cut off point was usually 4pm, but the manager there made exceptions and arranged for sandwiches to be prepared for Nan.
Getting Nan from lounge to car wasn't easy in the slightest. Getting her from the chair in the lounge, into my mum's wheelchair (she didn't have her own available) was very hard and took a lot of encouragement. The same went for getting Nan from the wheelchair into the car. It involved one carer holding the wheelchair steady, another holding a walker to help her transfer, and another practically picking Nan up under the arms whilst she did her best to move her feet just enough to reach the walker and then the car. We finally got her in and managed to fit the rest of her stuff in the car. She was in a lot of pain, but in better spirits that she was going to a much nicer place.
We eventually arrived at the new home at around 7.30pm. It had been a long day! A couple of carers came out and helped Nan out of the car and into the wheelchair. They took her to the lounge to have her tea, then showed my Dad and I to her room. We were given a pot of tea and biscuits to have whilst we put Nan's stuff away! I can't fault how we or my Nan were treated. When she was taken up to her room, Nan was chatting away with a smile on her face. She wanted to check everything was how she wanted it, and that the duvet wasn't too far up to her chin when she was helped into bed. Other than that, she was happy though. This was such a relief! We had a quick chat with her and the night staff introduced themselves then we left Nan to sleep in peace.
So it was a real nightmare of a day, and Nan had been very upset and hard to calm down in the daytime, but by evening time, things had vastly improved. I feel much better about her being in this new place, as I've heard terrible things about some of the carers in the temporary home. I'm not sure how much to believe, but I do have a lot of concerns.

Friday, 5 April 2019

First Cardiology Appointment for POTS-like Symptoms

I had my first Cardiology appointment today, and I have mixed feelings about how it went.

I got there in good time, and signed in at reception. The receptionists were lovely, and I didn't have to wait long before I was called through for an ECG. I had a great conversation about Game of Thrones with the nurse! I was quite tense, so it took three attempts for a decent reading but it didn't take long overall. Soon after this, I was called through for a blood pressure test just before I saw the consultant. If I remember right, my reading was 145/85, borderline high.

The actual appointment with the consultant took about 5 mins. He seemed pleasant enough and told me to take a seat.

He sat back in his chair, and the first question he asked was "so, what do you do? Do you work?" I didn't think that was very relevant, but I explained that I haven't been able to work for a few years due to how my medical conditions affect me (chronic pain, extreme fatigue etc) I also mentioned that the dizziness and faintness also contribute to me not working and that was the main reason for me seeing him today.

He then asked me to explain my main issues, that had led to the referral to him. I described to him the symptoms (dizziness, faintness, palpitations, I forgot to mention headaches and vision stuff though damnit) as well as when they occur (standing up or sitting up for a while), what makes them better (lying down, salty snacks, hydrating well) and worse (overheating, overexertion, eating high carb meals etc).

He only really wanted to focus on the dizziness and faintness. He asked if I'd been referred to an ENT specialist. I said I had and was due to see them for Vestibular tests next week. (You can read about my first ENT appointment here). He then asked if I ever had fainted and I said only once, 5 years ago, as far as I could recall. He also asked how long an episode of faintness lasts and I couldn't think so ended up saying "a minute?" even though it fluctuates and I could spend most of the day feeling dizzy and faint, I did make sure I said it is triggered by standing or sitting up for ages. He said "oh everyone gets a bit of giddiness then". I then told him it was way worse than that though and has contributed to me giving up work.

He said that my ECG was fine and in his opinion, he didn't think I had any heart problems, but he'd get an appointment booked for me to have 24hr heart rate monitor fitted. I was finding it hard to concentrate at that point and explained I was listening, but I was very dizzy. He made sure I understood what he said though and I said I did and the 24hr monitor sounded good. He wanted to end the appointment there but I stayed sitting and asked him if he would consider assessing me for POTS and order a tilt table test.

He said he didnt think I seemed like a POTS patient but he would see how the 24hr monitor goes first, so at least I have a chance at maybe having the test. In my opinion, he did seem like he'd made up his mind about me before I'd even walked through the door. And what does a POTS patient "seem" like anyway?

Going back to the consultant's first question, the answer I would've liked to have given goes something like this:

"So what do I do? I struggle to get through each day. I try to look after myself the best I can. When I can concentrate, I game or watch tv shows/movies, I reach out to friends online and do my best to be there for them through good times and bad. I try to enjoy life. I sometimes look for work online but when I really think about what my health allows me to do, working is just too much physically & mentally. So I try to keep up my hobbies & I try to help others in whatever way I can. But I guess that's not enough in this "work or die" society"

Overall, I suppose the appointment went reasonably well? At least he is willing to see me again (even if he does seem to have already made up his mind!), but what do you think? Have you had a similar experience? Please comment below!

Thursday, 4 April 2019

Some more Developments

This post is mostly another updates one, following on from the recent post; Updates and Some Worrying Family News


To recap, my Nan was in hospital after breaking her right Femur. She spent quite a bit of time in hospital after an operation to pin and plate her leg. She was then placed in a nursing home temporarily (quite far away from her home) to rehabilitate. The physios' aim was to get her to a point where she could mobilise enough to cope back at her Assisted Living flat. Unfortunately the nursing staff (physios, carers, nurses) came to realise that Nan had significant physical needs and was on the cusp of Dementia. She simply had too many needs for a general care package in her old flat. She would need to go into a care home.

Since then, social services have been involved and after a couple of assessments (with a cognitive assessment to be done this Friday), they have decided she needs to be in a Residential home with Dementia specialism. My parents, some of my uncles, and I have arranged to see a number of homes, to see what would be suitable.
My nan wants somewhere with semi rural views, a decent sized room (that she could put a recliner chair in), and a variety of meal choices that are freshly cooked. She did also want to view the homes before deciding which she would like to live in. Unfortunately, time constrictions mean that transport could not be arranged for her to travel that far to different homes on different days. We have collected brochures to show her and are hoping this will be some sort of compromise.
She also wanted to visit her old flat for a week, to decide which furniture she wanted to bring. Again, time constrictions and her health needs meant that this wasn't possible. As well as the mobility problems, diabetes, and suspected dementia, she is doubly incontinent and needs someone to change her pads at various times of the day and night. The care staff at the flat only come in up to 4 times a day and do not make night calls. They also do not do very personal care such as this. As a compromise, I took pictures of all the furniture she'd be able to choose from to take to her new home. Together, we decided what would be practical as well as nice and homely.
Because of certain decisions that have had to be made for her, my Nan believes that we are deciding things without her input and basically trying to control her life. This has made her very distressed, angry, and upset at times, alongside other signs and symptoms of Dementia. We have been doing our best to compromise, involve her where possible, comfort her, and do things to make her happy, but it has been extremely difficult.

We were contacted by the bed management person earlier today, to say that health authority funding for the temporary nursing home placement, will end in a week's time, so it would be best to move her into a permanent placement around the same time. This is of course quite a rush, and at the moment, we are shortlisting the homes we like best, and contacting our favourites to see if a room will be available next week. I will probably blog further, once Nan is in a permanent home, to tell you (my readers) how she is settling in.

My Cousin

Things have improved quite vastly with my cousin. Her general health is much better, but she is still unable to move her legs. She has been working with physios, swimming every day (she is a very strong swimmer) and is now having further tests in London, to establish what exactly happened and what the situation is now. To say this is a relief is an understatement. I know she may be reading this so I don't want to go into too much detail, but long story short, it's looking promising.

Mental Health

My mental health has been up and down, to be honest. I've felt the weight of the world on my shoulders, I've been having some very low days, some very emotional days with bad mood swings, some very anxious/panicky days, and today I've had a very agitated and hyper day. I don't have hypomanic episodes strongly/frequently enough for a Bipolar diagnosis, so I think these episodes are part of the BPD mood swings. I'm still waiting on counselling and desperately needing to talk to someone face to face. I think if things get too bad, I'll call out of hours team. I've spoken on the phone to them before and they were very helpful and kind. I've not had to take Diazepam more than a couple of times in the space of a couple of months, so luckily I still have some left. My GP is very very reluctant to prescribe even a small amount because of risk of addiction and/or overdose. 

Physical Health

Tomorrow, I will be having an appointment with a Cardiologist. This is because I have been very dizzy and having near-fainting spells for many years. I can only recall properly fainting once, 5 years ago, but I mentioned this to the GP before referral, just in case it was relevant. These dizzy and faintness spells are at their worst and usually are triggered by standing up or sitting up for a while. I find overheating, eating carbs, not having enough fluids, or being stressed make my symptoms worse. I find lying down, eating salty food, and hydrating all help, even if just slightly. I will speak about all of this in much more detail in my next post, as well as documenting how my Cardiology appointment went.

Wednesday, 13 March 2019

Chronic Illness and Hair Loss

[Image Description: Photo 1: A picture of Amy with straight orange shoulder length hair
                                 Photo 2: A picture of the back of Amy's straight orange shoulder length hair
                                 Photo 3: A picture of the bald patch on the back of Amy's straight orange shoulder length hair]

For around 5 years, on and off, I have experienced patches of Alopecia Areata, aka hair loss.

Blood tests have shown different results, B12 deficiency, vitamin D deficiency, Folate deficiency etc but even when my levels have gone back to normal (with the help of a course of tablets) I have still had the hair loss. The only thing doctors seem to have put it down to is stress.

Things have been particularly stressful recently (see my latest two posts) but I do try to take time to relax as much as I can.

It's only since I've had chronic illnesses that I have experienced hair loss, so I wonder whether this is connected. My immune system must be compromised and most of the illnesses I have are systemic; with symptoms affecting various parts of my body.

I'm quite vain about my hair. I enjoy getting it styled and coloured with bright dyes, but I also look after it well; washing every 2 or 3 days with shampoo and conditioner (the kinds that keep it very moisturised, but also keep the colour in), moisturising spray before using a detangling brush, then heat spray before styling. I make sure I have days where I let my hair dry naturally, without a hairdryer.

The first time I had Alopecia, the patch was small but right on the top of my head, so I had to style my hair a certain way to hide it. I felt mortified when someone noticed the patch! I struggle with my own identity (thanks, BPD), but I see my hair as part of it, so to lose it would be like losing a part of my identity! Since then, it has been happening on and off, every few months to a year.

As for treatment, most things don't do much but I've found that a prescribed product called Dermovate at least speeds up the hair growth. I won't say it'll definitely work for you, but if you experience patchy Alopecia, I recommend going to the doctor, having whatever blood tests they send you for, and asking if you could try Dermovate. It is a steroid treatment, and thins the skin so can only be used for a couple of weeks at a time, but compared to waiting for hair to grow back without treatment, this product has definitely sped up the hair growth for me. If you do try it, I hope so much that it works for you too.

Do you experience/ Have you experienced patchy hair loss (aka Alopecia Areata)? Have you found out the cause? Are there any other treatments you would recommend? Please comment below!


What is Alopecia Areata and How do I Treat it?: https://www.healthline.com/health/alopecia-areata

Vitamin B12 or folate deficiency Anemia: https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

Vitamin D deficiency:  https://www.webmd.com/diet/guide/vitamin-d-deficiency#1

What is Folic Acid deficiency Anemia?:  https://www.webmd.com/a-to-z-guides/folic-acid-deficiency-anemia

Dermovate Ointment:  https://www.medicines.org.uk/emc/product/940/smpc