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.

Resources

Counselling for trauma and PTSD: https://www.bacp.co.uk/about-therapy/trauma-and-ptsd/

What is EMDR?: https://www.emdr.com/what-is-emdr/

Cognitive Behavioural Therapy: https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/

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.

"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)

Resources

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

Going Abroad with Chronic Physical and Mental Illnesses

Last month, I went on holiday to Gran Canaria, with my parents. As a person with multiple mental health, physical health, and mobility problems, the thought of travelling abroad can be quite daunting and nerve wracking. Will I remember everything I need to pack? How would I be able to get across a large airport, when I can't walk far at the best of times? How will I keep myself calm? Will there be toilets available nearby? How can I plan my holiday to make sure I'm not overdoing it every day? These were just a few worries that I had. Below, I explain how I eased or solved these problems.

Packing:

About a week before I was set to go, I made lists of things to pack. I wanted to ensure I would be able to keep as cool and comfortable as possible.

• I picked clothes that could mostly be slipped on, with no fiddly fastenings to deal with.
• I made sure I packed extra medication (including extra pain medication) so that I definitely had enough for the holiday.
• To keep myself cool (as well as for easily removing makeup!), I packed a full pack of face wipes. 
• I packed travel size bottles of shampoo, shower gel, moisturiser etc. These are useful for keeping the luggage weight below the allowance, but also are easier on achy arms. There will be days where washing/showering is a struggle, so light products are helpful.
• Dry shampoo! I usually try to shower every other day, but sometimes I have to miss a few days, so dry shampoo is absolutely wonderful for ensuring my hair stays relatively fresh and clean.

At the Airport:

There are various things to consider, when at the airport, especially when you are chronically ill (physically or mentally). 

• It is important to book special assistance at least 48 hours before you are due to travel. 
• As soon as you arrive at the airport, find OCS for special assistance. They can help with getting across the airport and through security, as well as boarding the plane and even getting you to your seat (using an aisle wheelchair) if needs be. You can use your own wheelchair, if you have one, or one will be provided for you. There may also be mobility scooters available if you'd prefer to use those. I flew from Birmingham airport and found OCS opposite the Spar shop in departures. Make sure you have your passport and boarding ticket to hand, to show when asked. 
• This link will give you more information about special assistance at Birmingham Airport specifically. For any other airports, there should be information about disabled facilities and special assistance on their website.

On the Plane:

• Ask for assistance, if you need help with putting your hand luggage in the overhead locker. Airline staff are there to help!
• I find it's helpful to have anything you need for the flight to hand (maybe in a handbag if it fits) so that you won't need to get to the overhead locker and search for your bag amongst the others.

Arriving at your destination's airport:

• It's likely that passengers will need to alight the plane via the stairs (unless you're lucky and a tunnel is ready!) An ambilift will be available, however, for passengers needing special assistance.
• You will need to wait until everyone (not needing special assistance) has left the plane, before assistance and the ambilift will be available. This may take a little while, so it's best to remain seated until you see special assistance staff.
• If you have checked in your own wheelchair, it may be the case that it will arrive on a different carousel to your suitcase/s. At Las Palma Airport, the wheelchair arrived on the last carousel to the right. We weren't made aware of this beforehand, so had a bit of a panic before a member of staff advised us!

Transfers from the airport to your destination.

• Coaches can be a nightmare to get onto; with large steps and rarely any toilets. The amount of stops they make can increase the journey time by a lot as well. I would suggest booking a taxi. It pretty much halves the journey time!

At your destination

• I know it's tempting to plan to do a lot on holiday (especially if there's lots to do/explore!) but consider what makes you flare up. As you would at home (when having plans for days/nights out), rest up as much as you can, before doing anything potentially flare-inducing. Most hotels have areas near reception where you can relax, so keep that in mind if the cleaner needs to access your room. 

Are there any other tips you would give for fellow spoonies? Comment below!

Resources

https://www.birminghamairport.co.uk/at-the-airport/terminal-facilities/special-assistance/

A Review of Resonant Botanicals Qi of Calm Lotion (Sponsored Blog Post)

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I suffer from multiple anxiety disorders (including Generalised Anxiety Disorder and Social Anxiety Disorder) and find that I often need something to calm my nerves quite quickly. I get the most anxiety when in busy situations particularly. In the past, I've used Diazepam, which has been effective for anxiety, panic, and sleep, but I can only get this on prescription when close to/in crisis. This leaves me without adequate treatment when panicking or suffering insomnia due to anxiety. I did want to try something more natural, just to see if it would help. To be honest, I take enough medication and would rather not take any more! I was given the opportunity to try out and review Resonant Botanicals Qi of Calm Lotion, and decided to give it a go.

Resonant Botanicals Qi of Calm is a lotion, combining herbs, essential oils and green tea, in order to help with anxiety and sleep. The combination of herbs, including lavender, skullcap, and ashwaganda, works to protect against stress and maintain an emotional balance. Essential oils, including Frankincense, Chamomile, and Bergamot, help with relaxation. Finally, green tea contains an amino acid that is also said to promote relaxation.

How to use: The lotion works by being applied to certain areas of the body which are said to be associated with balancing emotions and promoting a sense of calm. Rub in a small amount of the lotion on the left side of the abdomen, (just below the ribs), on the neck below the chin, and the bottoms of your feet. 

The Bottle

Qi of Calm Lotion comes in a fairly large silver bottle, with a pump dispenser. Directions for use are clearly displayed on the left side, and ingredients on the right side. The lotion is very easily dispensed, and one dispensed amount is more than enough to apply to all of the points recommended.

The Scent

The lotion has quite a herbal scent; which is quite pleasant. I find the scent itself quite calming, and believe this is probably partly how the product works. Personally, I feel the scent lasts a bit longer than I would've liked, but this is purely subjective. 

The Feel

The texture is soft; with not too thick or thin creamy substance. The lotion spreads very well, so only a small amount is needed. One bottle should last you a while. 

Is it Effective?

I've not noticed a significant improvement in my sleep, but I do find this product has an immediate calming effect. I think it is best to use it shortly before bedtime or any other time you need to feel calm quickly. 

Give it a try!

If you are interested in trying Qi of Calm Lotion, then you can find the product page here . I do recommend giving it a try, it is definitely becoming part of my daily regime!


Resources:

Chronic Illness Bloggers network: http://chronicillnessbloggers.us12.list-manage1.com/track/click?u=f454aec32953c83c5884455f5&id=cb55a11487&e=0c4f860658

Resonant Botanicals Qi of Calm product page: http://resonantbotanicals.com/product/qi-of-calm-for-anxiety-relief/

Resonant Botanicals website:  http://resonantbotanicals.com/

Dear Distant Friend

I'm writing this whilst feeling very low and forgotten. I know I shouldn't dwell on the past, but it's hard to let go of old friends when they drift away. It's hard because the memories don't go, especially the memories of times you've been there for each other through some really difficult stuff. I can't just forget you, as if you never mattered. Because you really really did.

There could be many reasons why we drifted away, but please don't let it be because I got ill. All I wanted was to be believed and supported. I can't expect you to fully understand (although I really would appreciate you trying to) but when I cancelled plans, please believe me when I say it's because I wasn't well enough to meet up. I would never cancel because I can't be bothered. I loved the times we spent together and I get frustrated with myself for being ill (even though I know it's not my fault).

I miss the closeness we had. I miss how we'd confide in each other and be there for each other, through good times and bad. I wish I could switch off my feelings, because they are so painful, but I can't

One day, I hope I'm able to let you go if we're never close again.

My Socially Anxious Mind

"Oh no, I have to walk through a crowd of people. Act normal!

Am I avoiding eye contact too much? I'm sure I am. Just look at people so they don't think you're being weird.

No! You looked too long. Now people will think you're staring at them!

Am I walking weirdly? How about my posture? Am I walking too fast or too slow?

What if I get in their way? What if I try too hard and look like I'm avoiding them?

Do they think I dress weirdly? Is my makeup smudged? Does my hair look unruly?

My breathing's getting faster, I'm sure I'm sweating. I'm sure I look really nervous and suspicious. What if I'm acting suspiciously? Can they tell I'm panicking? Why can't I just cope with this?!

Oh god, I'm sure they can tell I'm panicking. Just. Act. Normal!"

Accompanying someone to a Work Capability Assessment

I've had a face to face Work Capability Assessment, as well as a face to face assessment for Personal Independence Payment in the past. I'm not sure I thoroughly described my experience of these assessments, but today I want to talk through a Work Capability Assessment my father had recently. I accompanied him and took notes throughout.

We arrived at the assessment centre, with the daunting thought that we'd probably have to park quite far away. From my experience, I know that there are a lot of cameras outside these centres and (also from my experience) there's a very high chance that the assessor is watching you to see how far you walk from your car/stop to the building, and they will write their "findings" in your report.

Luckily, we found a space just a few metres from the building. As we entered, we were greeted by a G4S security guard; who immediately asked to see our appointment letter. They also asked if my father could manage stairs or a lift. Now we were under the impression that the assessment would be held on the ground floor, and I made this fact very clear to the security guard. I also mentioned that, although my father could manage to use the lift, he wouldn't be able to use it in the event of a fire & would not be able to use the stairs. The security guard accepted this (reluctantly) and showed us to the ground floor waiting room.

The waiting room was empty, apart from one elderly woman who was noticeably struggling with pain and balance. Although the waiting room was small, there were two cameras strategically placed to film anyone waiting for their assessment. I asked the woman if she was ok, and if she needed a cup of water (there was a water cooler nearby). She declined, but told me she was very nervous about her assessment, and was fed up that she'd been waiting 45 minutes already. I told her I thought that was awful, and she replied that the couple before her had been waiting over an hour. Just before we were called in (after a receptionist came to check my father's ID and sort out travel expenses), the couple the woman had mentioned, came out of the assessment room. One of them (I assume was the claimant) was clearly in agony and could barely walk. People who are struggling this much, should not have to make their way to an assessment. They should either be assessed on paper, or in their own home. Unfortunately the rules (for an ESA claim at least) state that a doctor's note is required before a home assessment is considered. There's not much time to organise this, so this means that people are having to drag themselves to assessment centres that are not always suitable for their needs.

A rather snooty healthcare professional came to call my father in for his assessment. It was easy to tell he was watching my father's every move as we walked towards the room. I have no doubt that this will be (inaccurately) noted in the ESA report. We sat down, and I got out the folder of evidence we wanted to show, as well as a notepad and pen. The "healthcare professional" (I have no idea what his actual profession was, and his badge only said Healthcare Professional) noticed this, and commented that I was allowed to take notes as long as they were just for reference and not to be used in any investigations (hmm). I gave him my most patronising smile and said that these were just for reference. It was obvious to me that he wasn't happy about this, but there was nothing he could do. I know what's allowed. One thing I wasn't happy with, was that he didn't even introduce himself to us.

The assessment then began. The questions asked first were to do with the medical conditions my dad was claiming ESA for. The assessor went through each condition and asked how long he'd had it for, who diagnosed him, any investigations he'd had, what treatments he was on, operations he'd had, whether he'd noticed any improvements, and which specialist/s (if any) he saw for these conditions. What I found was that I had to reword some of the questions the assessor asked, in order for my dad to understand them. The assessor spoke quite quietly, mumbled a lot, and didn't word questions in a clear way. For example, when asking about my dad's total knee replacement surgery, he asked how he was rather than whether he felt there'd been any improvement since the operation. For some, it may seem easy to get what the assessor meant, but when you are put on the spot, it's much better to be asked questions in a clearer way.

We next went onto the tablets my father is currently on. I'd brought them with me, so put them on the table so I could show each box to the assessor. He asked what my father took each medication for, how often, how many at a time, what strength, how long he'd been on them etc. As my dad answered, the assessor checked through each box (presumably to see if dad was telling the truth...).

After this, the assessor asked how we had travelled to the assessment centre, and how long it had taken us. He also asked who dad had travelled with (me!), my name, and age.

We discussed sleep problems next i.e., did dad have any, why he thought he struggled with sleep, how long he slept on average etc.

We then went onto the questions asked in the ESA50 (the limited capability for work questionnaire). The assessor started with personal care questions; such as washing and dressing. He asked how long it took to get out of bed, whether he needed help with dressing or used any aids (bed included). He also asked whether my dad was able to wash/dress his upper and lower body, have showers etc. My dad made sure to mention how much he struggles, and how pain and stiffness severely affect him.

Household tasks, cooking, shopping, and leisure activities were the next topics the assessor asked questions on. He asked what types of chores & cooking dad could manage, how often, whether he needed help, why he struggled and so on. I told the assessor that there's not much we can manage and I have to help my dad if his pain gets too much or he becomes confused.

As for shopping, we do nearly all of ours online (my mum and I take turns with this, as dad can't use a computer). We only go to the shops for a couple of bits (bread and milk, for e.g.) The assessor asked if we walked to the shops, and how far away they were. Dad said that the shops were only 5 or 10 minutes away, but we still had to drive there.

Dad was asked if he had any hobbies, but there wasn't much to discuss on this topic. His concentration is poor, and he doesn't have the energy spare for socialising so it's just light reading and watching a bit of television. The assessor then asked how long dad could stand/sit for. He tried to lead dad to agree with his suggestions for an answer (standing/sitting for 45 minutes, or 2 hours?). Dad was already exhausted and needed prompting, so I told him that it was more like standing for 5 minutes, and sitting for 30 minutes before having to sit back down or move around. This was due to stiffness in joints and pain. I'm hoping the assessor noticed that my dad had to get up a few times during the assessment, for these exact reasons.

The last question asked was how long my dad could walk for, before having to stop. I notice that assessors tend to ask how long (time taken) rather than how far (distance). This does not lead them to an accurate answer for how far a claimant can walk, however, and I think they do this on purpose. No two people will travel the same distance in the space of 5 minutes, for example. One may be able to walk 200 metres, whilst another could only manage 50 minutes. I believe the assessor predicts the furthest distance walked in the time specified; which of course makes the claimant appear more able than they are. I noticed that questions were repeated and reworded sometimes, in order to supposedly "catch us out". I think our answers were consistent though, and I'm glad I'd made my dad aware beforehand that this would happen.

The last part of the assessment was the clinical one; where dad had his blood pressure checked, then had to repeat some exercises (if possible). This consisted of bending/turning his head, moving his arms forward, backwards, to each side & over his head. He also had to make a fist with each hand, and push against the assessors hands. Lastly, he had to sit down and stretch and bend his legs, then push each one against the assessor's hands (both in front and behind).

At the end, the assessor explained what would happen next (writing up the report, sending it to the decision maker etc) and that we could ask for a mandatory reconsideration if unhappy with the decision. We were so glad to get out of the building soon after this!

So that was the face to face Work Capability Assessment! I hope my account of it may be helpful to anyone waiting for theirs. I'm no expert, just someone who has been through the process, but I am happy to read any comments or answer any questions you may have. If I'm not able to answer your question/s, then I will let you know where you may find the answers.

Bendy Life

Last year, I had an Orthopaedic Assessment for my subluxing left knee . It ended up as an assessment of most of my joints, and I was diagnosed with Hypermobility Syndrome. I was referred on for physiotherapy (mainly for my knee) to strengthen the muscles round the joints and hopefully lessen the chance of subluxations/dislocations. I started physio in the area I lived, but this stopped when I moved out of the area.

There were a lot of things to sort out during & after the move, and my worsening health meant that getting referred for physio near my new home was on the back-burner for a while. I finally got to a point where it felt like a good time to start physio again. I dreaded the idea of having to give my life story to a stranger again; with the worry that my physical difficulties would be underestimated (which felt like the case with my previous physio!)

I had my first physio session last Friday and was very pleased with it! The physio was lovely! She was so understanding, considerate, and she listened to me. It turns out that she has Hypermobility Syndrome too! She examined me and saw how I stood, walked etc. Because I have frequent dislocations, she told me that my Hypermobility Syndrome is severe. 

She asked me what I hoped to achieve from these sessions. I said that I would like to have less subluxations and a little more stability in my hips so I could walk a bit more. If I can physically go on a walk (no matter how short) then I have more chance of improving my agoraphobia. At the moment, I'm finding that my physical problems worsen some of my mental health ones.

When talking through (and getting me to try) exercises, she would listen to my concerns and notice if certain exercises were causing more strain/pain than they should. This was so different to the last physio; who implied I simply was reluctant to exercise...

As well as exercises, the physio suggested insole arch supports (as she noticed the arches in my feet are quite low) as well as kinesio tape so that my joints are less likely to pop out while I exercise.

I see her next in a couple of weeks, where I will be trying exercises while wearing kinesio tape. I've never used this before, so am interested to find out if it'll help.

Session 2: Starting Interpersonal Therapy

At the moment, I'm vlogging about my experiences with Interpersonal Therapy. You'll find my Chronic Illness playlist here . Please share and subscribe if you like my videos! I'll be back to blogging very soon, and my next post will be about starting Physiotherapy for my Hypermobility Syndrome. See you soon!

My Not-CBT Therapy Session

(Please see my blog posts entitled Let's Try This Again , and Let's Try This Again: Part Two to catch up, before reading this latest post).

So, the wait for therapy turned out to be much less than the 10 weeks I was told to expect! I was very surprised, but glad that I could be seen soon. I've been teetering on the edge of crisis, so have really needed help as soon as possible. The place, where I was to have therapy, was a little further away than I expected, but all slots had been filled in clinics nearer my home. Fortunately my dad could take me pretty much any time though; so getting there wasn't a problem.

I was dreading it on the day. I was under the impression (from the therapist on the phone) that I would be going through CBT yet again. This would be the 4th time, after 3 times with little or no improvement! Thankfully it turned out to be more of an assessment with a mental health nurse (who was also trained in various non-CBT based therapies). This session was very very different to what I expected, and the nurse seemed to pick up on a lot of things about me, when I spoke about various problems I have, things that've happened etc. He decided that CBT wasn't really the appropriate type of therapy for me, and that Interpersonal Therapy would suit me more. He's given me some information about this type of therapy, and I get to decide at the next session (31st October) whether I want to go ahead with it & continue with him as my therapist.

I wanted to talk about this appointment, and how I was feeling, as soon as I possibly could once I'd got back home. If you've read my Quick Announcement post, then you will know that I have now started vlogging about my chronic mental and physical illnesses. I decided to talk about this session in more detail by vlogging about it. The vlog is entitled First Therapy Session That Wasn't CBT!!! If you enjoy my vlogs, please share and subscribe!

I may write a short blog about my next therapy session, but want to vlog again to give more detail. I'd like this blog and my vlogs to complement each other, & I am hoping this works out well.

Thanks for reading, and please comment below if you have any suggestions!

Quick Announcement

This is just a short post, to let you know that I've now started vlogging! A friend suggested it to me recently and, after umming and ahhing for a while, I finally decided to give it a go. I might use it for little updates or to focus on one topic at a time, I haven't decided yet. I do want to try and post vlogs regularly though. Apart from lots of furbaby videos (and a few random ones) there's an Introduction Vlog on there for now. Go check it out, and subscribe to my Amzie Bear channel if you like it!

I will of course keep blogging here, so stay tuned!

Yay!

This is a very short post, to point you towards a blog post I recently wrote for a website. "The Secret Illness" shares people's experiences of Obsessive Compulsive Disorder. These submissions really show the various forms OCD can take, and how complicated it can be. This is the first time I've been asked to write something for a website, so I'm very excited about it!

Here you go: http://thesecretillness.com/2015/11/02/amy-25-west-midlands-uk/