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.

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. 

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.

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!

Some more Developments

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

Nan

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.

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!

References

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

Updates, and some worrying family news

Since my last post quite a few things have happened.

Nan

My nan has now been temporarily placed in a nursing home. It's further away from family than she'd like but she at least accepted this was the best place for her, at least while she's rehabilitating. Her family (including my dad and I) are taking turns visiting her, so she only has 2 or 3 days where she doesn't see anyone other than the nursing home staff.

Her suspected Dementia is definitely getting worse and she is now doubly incontinent. As for her mobility, on a good day she can stand with the help of a machine (a Rotunda I think?) but she generally needs hoists to get her out of bed and into a chair.

Her nursing home placement was originally only supposed to be 4 weeks, with the hopes that she would be rehabilitated well enough to go back to her assisted living flat. Staff were under the impression (due to Nan convincing them) that she would receive round the clock care in her flat, and carers would tend to her every need. After speaking to some of the family, however, they now know that this is not the case. Once the 4 weeks have passed, Nan will have a thorough assessment of her physical needs, mental health and capacity. Hopefully Dad and I will be able to attend for any other information needed.

To say she is settled in this home would be quite an overstatement. Staff have told us that she is complaining about everything and accusing them of taking much longer to see to her than they actually are. We spoke to one of the nurses based in the home, who has got to know Nan fairly well, and she definitely agrees she has Dementia. She assured us they will assess her for this at the end of the placement, and along with any other concerns raised, we will discuss where she will go next.

Last time I saw Nan, she seemed to accept that she now has too many needs for her assisted living home. She reluctantly accepts she has to stay in this nursing home for now but she wants to go into one much nearer the family when she comes to the end of her placement here.

I feel so conflicted about Nan to be honest. She really annoys me, and I get embarrassed about the way she speaks to staff, but I have to remember that a lot of her behaviour etc is down to the Dementia and for the most part, she can't really help it. I love her to bits though and worry about her constantly. The main things I want are for her to be happy and safe. She's safe at least, but I wish something could help her feel happy. My family and I do our best to ensure her room is as homely as possible but it's impossible to get it just right, and unless it is exactly the same as her old flat, she isn't happy.


Cousin

A few weeks ago, one of my cousins went to the Philippines to do work experience for her medical degree. She'd had all the vaccinations needed, but unfortunately a mosquito bite infected her with Dengue Fever . She was very poorly already and was unable to tell the hospital staff of any other things that had happened.

A few days after she was admitted into the hospital, she became critically ill, and doctors discovered multiple jellyfish stings on her body. She'd been swimming in the sea, and luckily was wearing a bathing suit instead of a bikini, so some of the stings didn't quite get through her skin. Regardless, she is now in intensive care and has been intubated. This is because the neuro-toxins from the jellyfish stings are severely affecting her ability to breathe. She is also experiencing paralysis in her legs.

There have been points where doctors have been unsure as to whether she will survive. Apparently the stings had been in her for a week before being discovered, and the Dengue Fever masked the symptoms of the stings.

We are all so so worried about her, but glad that friends of her parents are keeping us updated about her condition. My aunt and uncle are flying over to the Philippines, so hopefully there will be more updates soon.


My Mental Health (TW: Self Harm)

This year, I planned to do everything I could to improve my mental health. I was so fed up of feeling so stressed, anxious, agitated, demotivated, and low. I was also really frustrated about how easily triggered I am by any mention or discussion of abortion. It's been 10 years since I had my traumatic one and I've never really faced it. I still have a few weeks left on the waiting list for counselling with the Primary Care team, but I feel like I need to start therapy or at least talk to someone ASAP. Once my counselling for this has finished, I plan to get in touch with Women's Aid, about the abusive relationship I was in when at university.

At the moment, I feel like I cannot concentrate on much at all, let alone myself. I am going through the motions, trying to keep as busy as possible, but suffering physically because of it. My head is full of thoughts again, and to be honest I am self harming every day again. I feel quite sore because of it, but I get such urges to do it, I can't resist. When I'm not doing it, I'm thinking about it and it feels like the only thing I can control right now.

As well as this, I can't stop thinking about my Nan and cousin. Is Nan having a good day or bad day? Have the nursing home staff been tending to her needs quickly? How is Nan treating them? What happens if she becomes too verbally aggressive? Will she be assessed properly? Will Dad and I be able to attend the assessment so the social worker etc can get our experiences and views of her behaviour? These are just some of the worries I have about Nan. As for my cousin, my main terrifying thoughts are whether she is still alive, whether she is unconscious because she's so poorly, or because the doctor has put her under anaesthetic. My cousin and I aren't very close, but I still love her and the thought of losing her is too much to bear.


My Physical Health

As I said above, I am trying to keep busy to distract myself from my thoughts, but this is affecting my physical health. I am very dizzy and feeling faint, and having times where I almost fall over or faint.
Alongside this, I've been having some nausea, worse aches and pains, very bad joint stiffness, and I'm extremely tired and wobbly on my feet. I'm not sure how I'd cope outside without my walking stick. I have my ENT follow up next month, where I will be undergoing Vestibular tests . I also have an appointment with a Cardiologist next month, where I intend to ask about being assessed for POTS . I really hope both specialists will thoroughly assess me and be able to come up with a diagnosis on that day. I will make notes, as usual, of my symptoms, what makes them worse/better, when symptoms arise etc. In the meantime, all I can do is make sure I sit whenever possible, and lie down when I need to (which seems to be most of the day!)

So this is what's been happening with me recently! I will write another post when I know more, and my main posts will be about my appointments next month.

Have any of my readers experienced Vestibular tests? I would love to know what happens and if you get a diagnosis on that day. Also with Cardiology, do they do any tests (as well as an ECG) to thoroughly assess your symptoms?

If you can advise, that'd be great! In the meantime, take care everyone, and thank you so much for reading xxx