Thursday, 7 September 2017

How it Feels to be Numb

I'm having a numb day today. I have these a lot. If I've recently had days with intense mood swings, this can be a relief, but other times, it makes me feel as if I'm broken.

It can be hard to tell if I'm thinking or feeling these things, but when I'm numb, it's like I'm not even human. I'm just some thing that exists with no real purpose. Sometimes self hatred will creep in and I'll become very depressed, but mostly, I don't feel anything.

I want to be "normal" and act like a human being. I want to know what kind of person I am. I want to know what my personality is, and why I should even exist. I want to interact like a "normal" person, but it's as if I've forgotten how. I feel like/think I am an imposter who has to perform reactions and guess how I should respond to things such as someone talking to me. I feel as if I'm doing everything wrong though, and others will notice, and think I'm either weird or rude.

Most of the time, when I feel numb, I dissociate too. Nothing feels real, and I struggle to "ground" myself. I try to focus on things I can see, smell, touch etc but it can be very difficult to convince myself that these things mean that I am real, and I am here.

Eventually, I will come out of this numb feeling and hopefully not straight back into intense mood swings. At the time though, it's as if I will never come out of it.

Do you experience numbness? How does it feel to you?

Wednesday, 23 August 2017

Good Day vs Bad Day

 Good day

The above picture is how I usually look on a good day.

On a good day, I'll wake up in the morning; feeling like I can get through the day. My fatigue is bad, but not unbearable. It will take me about 15 mins to get out of bed and, once the dizziness is gone, I can go to the bathroom and brush my teeth. I will rest after this, and have a wash or shower once my pain meds have kicked in. The pain medication does not completely rid me of pain, but it makes me much more functional than I would be without it. 

I will need to rest, before getting my breakfast, and rest again, before drying my hair. After this, dressing, and makeup, I will have just enough energy to leave the house. On a really good day, which is rare, I will meet a friend for lunch. Anxiety means that I will need to be picked up by them, or given a lift by my dad, but the main thing is that socialising at all is possible. 

Once I'm home, I will rest for the duration of the day; having a few hours nap in the late afternoon if I'm able to sleep. Tea will be something easy to prepare/cook, or it might be a takeaway.


Bad day

The above picture is usually how I look on a bad day

My bad days tend to be very bad. I'm in a lot more pain, pain meds won't touch it (even though I will need to take more than on a good day). I'm dizzy, headache-y, shaky, nauseous, and absolutely exhausted. I will get up in the morning (my cat, Billie, demands it!) but it will take me at least double the time as a good day. I will struggle to stay awake through because of fatigue, but I will struggle to sleep, because of pain and nausea. I won't have the energy to shower or wash. I will make it to the living room for a coffee, brush my teeth after a rest, and "wash" myself with face wipes after another rest. Breakfast will be anything I can grab; such as an apple. It'll have to be something light. 

I will struggle to brush my hair, and I will find the comfiest, loose clothing I can find. The Fibromyalgia makes my skin very sore (as if I'm burnt and bruised all over), so I have to think about the tightness and the material in the clothes I wear. I will take my laptop into the living room, and try to concentrate on a programme, casual game or video clips. My mood will be low, because I'm not able to do much at all. I will feel fed up and I'll be likely to isolate myself from others. 

I will stay sat up for as long as I can, and then will go back to bed until teatime. I may be able to nap, but I'm very unlikely to feel much better for it.

Tea will be a takeaway, and my dad will have to wash up, as standing for more than a few minutes will make me so dizzy, I'm very likely to fall. 

-------------------------------------------------------

Most of the time, my days are something between good and bad. I'm able to manage basic things, such as personal hygiene and preparing simple meals, but things like housework, socialising etc are extremely difficult or impossible. I manage my symptoms by balancing rest with trying to keep moving and doing my physio. I do this to lessen the chances of my joints seizing up, and also for general health. 

How do you manage the symptoms of your chronic illness/es? Do you have any hints and tips, that you  would like to share? Comment below!

Monday, 21 August 2017

Ultrasound Therapy for Hip Bursitis - My experience

(TW: Mention of weight and exercise)

A little while ago, I noticed I was getting a different kind of pain in my hips. The pain radiated over my hips and halfway down the sides of my thighs. It did feel different to my usual pains from the Hypermobility Syndrome and Fibromyalgia. I mentioned this at a medication review, and made an appointment with my GP. She examined my hips and asked me to do a couple of things to see if it affected my movement. Being hypermobile though, I still had a large range of movement. The GP said she suspected Hip Bursitis and referred me for physio.

Hip Bursitis ₁ is basically inflammation of the hip/s. There is a build-up of fluid and, with that and the inflammation, pain and tenderness occurs. It can be caused by a number of things; including injury or trauma. I don't remember knocking my hips on anything, so think mine was caused by the regular subluxations I have. My hips are very hypermobile, and apparently this is quite noticeable when I walk.

It was only a couple of weeks before my first physio appointment, thankfully, and I saw a lovely woman who knew about my conditions. She examined my hips and showed me an exercise I could do; in order to strengthen the muscles round them. She said it's quite rare to get bursitis in both hips (I guess I was just very unlucky!) but both my hips are equally hypermobile, so this is probably why.

She also booked me in for ultrasound ₂ sessions. I asked about this, because I'd never heard of it. I thought physiotherapy mainly involved exercise, but apparently there are other types of therapy that can be used. The physiotherapist told me that cold gel is put on my hip, then the ultrasound device is rubbed on both for 5 minutes each. It should help with reducing the inflammation. Some people only need one or two sessions to feel any sort of benefit, some need more.

I found the ultrasound very gentle, and relaxing to be honest. We started with me lying on my side, but this proved too painful, so I would have the sessions sitting down. The ultrasound device reminded me of the ones used for scans. Of course there's no screen, however. I found it a bit difficult to sit completely still; due to muscle twitches I experienced. I think this may be because of the Fibromyalgia. The physio understood though, and this didn't disrupt the sessions too much.

I had about 4 sessions, and although I still have a bit of the bursitis pain, it is a lot less painful than it was, when I started physio. I made sure I did the exercises too, which I think have also helped.

I've decided to see what kind of exercises I can tolerate, as well as the physio. I want to do this for general health, and to help me manage my weight. Since being on mood stabilisers, I've found my weight increasing and I want to try and lose that. Wish me luck!

Resources

1. https://www.arthritis-health.com/types/bursitis/hip-trochanteric-bursitis

2. http://www.mybursitis.com/bursitis-ultrasound.html

Friday, 28 July 2017

After CMHT Discharge

On 26th June, I was discharged from the Community Mental Health Team (CMHT). I was told I'd be sent my care plan in the post, so I'd know what to do depending on how well/ill I feel. At the time, I was having a fairly ok day and, although I felt anxious about being discharged, I accepted it and thought that maybe this was a good time for me to try coping just with self help and my support network of friends and family.

It was about 4 weeks before I eventually received my care plan, and in that time I was feeling more unwell, and really needed to be reminded of what to do. I rang the mental health team, to ask for my care plan, and also with the hope of being able to talk about how I'd been feeling. The line was bad unfortunately, and there was a lot of background noise. I had to repeat myself a lot, and couldn't face talking through how I felt in the end.

When my care plan arrived, I had a look through it and saw that there'd been some errors. On the front page was the Summary/Formulation of Need. It said:

Amy has been seen in primary care, however did not complete her therapy. There has been a history of bullying in school and emotional distress after a traumatic life decision. Amy feels that she has a diagnosis of Borderline Personality Disorder after comparing her symptoms to others and would like an OPA with a consultant psychiatrist in order to obtain a formal diagnosis. She is currently not working due to chronic pain caused by ME and hypermobility. She has agreed to have a short piece of work in regards to self compassion and anxiety management prior to her discharge from services.

26/6/17: Discharged from CMHT to continue her recovery independently in the community

As you may know, I have been formally diagnosed with Emotionally Unstable Personality Disorder (also known as Borderline Personality Disorder), but this was not confirmed in the Summary/Formulation of Need. When talking about my chronic pain conditions, it's written that I have ME and hypermobility. I actually have Fibromyalgia and Joint Hypermobility Syndrome.

The next page gives information on how I will be cared for in the community. In this, it mentions my GP is to provide future care and support. It also mentions my mental health medication (Aripriprazole 10mg and Sertraline 200mg) and that I can self refer to primary care if I need more support with anxiety.

The last few pages advise on what I would notice and what I should do when feeling relatively well (this is coded as GREEN), when I'm feeling that things are building up (AMBER) and when I am at crisis point (RED).

For GREEN, I would notice that I'm feeling more loved, less anxious, more motivated and impulsive etc. While I feel like this, I should continue with distraction techniques, self refer to Primary care if I feel able to tackle anxiety issues, and remind myself of positive comments I've received.

For AMBER, I would notice that I'm feeling low, that there's no point to anything, I'm being more argumentative, panicking, and having urges to self harm. While I feel like this, I should contact CMHT or out of hours and try to use coping strategies.

For RED, I would notice that I am having suicidal thoughts, dissociating a lot, becoming paranoid and isolating myself. While I feel like this I should contact CMHT and I may be reallocated to CPN and/or have an emergency OPA or medication review.

Although this care plan sounds pretty comprehensive, I've been finding it hard to concentrate on it and follow the advice. I've been feeling that I am between the Amber and Red stages, so should really contact CMHT but I'm put off by my experience when calling to ask for my care plan. I'm wondering about whether there's any point to asking for help from them. My mental health conditions are ongoing and what I need is ongoing care from mental health services. I remember my CPN saying that, due to funding cuts, they were only able to offer short term help. Should I call anyway? Will I be able to talk to someone or will there be lots of background noise again? I may need to talk about some difficult/private things and I worry others will hear me.

What I really want/need is ongoing contact with a CPN (preferably the one I was with before). It takes me a while to really open up and let go. I can sound positive if I don't know the person I'm talking to. I find it hard to really say how bad things are, so I may seem ok. Unfortunately, it looks as if I wouldn't be able to get a CPN on more than a short term basis.

I've been trying to use my support network as well; most of them being online. Thanks to social media algorithms, however, the status' etc that I post aren't always seen. I had a time very recently when I was feeling particularly low/paranoid/panicky and posted a status basically asking for friends to check in on me and notice when I'm spiralling. The first time I posted it, no one commented. I posted it again, and one person commented. Although I was of course grateful for one person noticing, I felt upset and angry that no one else had. I felt that surely out of 80ish friends, more would notice. I thought I was being ignored, or that I'd been muted/unfollowed by people I thought cared about me. I felt so awful and I guess I was getting to the RED stage of my care plan. I was too engulfed in my own horrible thoughts/feelings though, so could not motivate myself to read it and follow it.

The next day, I decided to take a break to see if anyone would notice I wasn't online. That only lasted a couple of days because I was so desperate to talk to friends, so no one noticed.

A few days after, I posted another status and was surprised to get a fair amount of comments of support. It definitely made me feel a bit better, although I knew that I still wasn't feeling well. Since then, I've had times where I'm numb, times when I'm emotional, and times where I have self harmed and felt suicidal. These feelings have been changing so rapidly though, I haven't been sure of what I should do. What if I feel really ill and decide to ring CMHT, but then I sound ok when I get through to them? What if they decide I should just rely on myself and then I'm left feeling awful again? Having rapidly changing moods is so hard when it comes to accessing help. Just because I may seem ok at one point (and may be feeling ok/numb as well) doesn't mean I'll feel like that for the rest of the day even!

The self compassion work did help me a bit, and I started to feel less paranoid if a friend didn't reply to me. I could consider that maybe they were just busy or not feeling well enough to talk. A support worker helped me with self compassion. Having that support from her did help me feel a bit better, but now it's not there, I've been feeling awful, alone, and paranoid about friends again.

The distraction techniques help as long as I'm not too unwell. I find it hard to catch myself before I get too ill though. My motivation to use the distraction techniques tends to be quite low as well.

I feel useless when it comes to looking after myself!

Tuesday, 4 July 2017

What Dissociation Feels Like to Me

This is something I vlogged about a couple of days ago (see below). I've been wondering what to blog/vlog about recently, and a friend suggested I write/speak about Dissociation and how I would describe my experience of it.


According to the Merriam-Webster website, dissociation is "the separation of whole segments of the personality (as in multiple personality disorder) or of discrete mental processes (as in the schizophrenias (sic)) from the mainstream of consciousness or of behaviour"¹

You do not have to have schizophrenia or multiple personality disorder to experience dissociation, as it is "one way the mind copes with too much stress, such as during a traumatic event"². Anyone can have short experiences of dissociation, but it is when it becomes long term that a dissociative disorder may be considered. 

The kinds of things you can experience when you dissociate may include:

  • " having gaps in your life where you can't remember anything that happened
  • feeling as though the world around you is unreal
  • feeling as though you are watching yourself in a film or looking at yourself from the outside
  • feeling as if you are just observing your emotions
  • your identity shifting and changing" ³
There are many other things you can experience, as part of dissociation, so no two people will experience this in exactly the same way. As shown on the Mind website, there are clinical terms for each type of dissociative symptom (for example, derealisation) also. 


For me, dissociation is a symptom of the disorder I have; Borderline Personality Disorder . The kinds of things I experience include feeling as if I'm not real, or the world around me isn't real. I can also feel as if I'm watching myself speaking or moving, and I do not feel completely in control. I may feel disconnected from my emotions, or I may start panicking (usually because of not feeling in control). Sometimes, I will look in the mirror and not recognise the person looking back at me. 

I dissociate quite often, and it can be very hard to "ground" myself. Grounding  is "a technique that helps keep someone in the present. They help reorient a person to the here-and-now and in reality". There are various techniques for grounding yourself, and they usually involve focusing on stimulating your five senses. One particular example  asks you to try the following: 

"Look around you. Identify and name:

5 things you see
4 things you feel
3 things you hear
2 things you smell
1 thing you taste "

Of course different techniques will work for different people.Have you found any techniques particularly helpful, if you experience dissociation? Please comment below. 


Resources





⁶ https://uk.pinterest.com/pin/38632509284472245/

Tuesday, 30 May 2017

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.





Wednesday, 3 May 2017

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!"