Tuesday, 20 March 2018

The Big Meeting

A couple of weeks ago, a meeting was set up to discuss concerns about my nan, and the needs that she has. Nan insisted on being present at that meeting.

Myself, my parents, and some of my uncles were also present. Luckily, we had time to cover one topic out of earshot of my nan. This topic was her mental health and capacity.

Over the past year or so, some family members and I have started to notice some changes in Nan's personality, memory, mood, and ability to process things. She seems very depressed as well as argumentative and verbally aggressive at times. She is finding it hard to follow conversations and often forgets things or mixes things up. She has trouble organising her medication. She does not cope well with bright lights or any kind of noise, and often complains of her head thumping. She doesn't seem to realise how much help she needs either. There's probably more that I can't think of right now, but these signs and symptoms are definitely worsening.

I explained all of this to the staff present (namely a doctor, an occupational therapist, a social worker, and a discharge nurse) and the doctor said he would arrange for Nan to have a cognitive assessment. I think the nurses involved in her care had noticed certain things themselves. 

Straight after this, my nan came into the room. She basically lectured us on speaking about her behind her back. I wasn't sure what to say to this as I feel conflicted about it. I don't like to speak about people behind their back, but there are important things to be said that might not have been put across properly if Nan had been there. She tends to speak over people and doesn't allow them to finish what they say, especially if she disagrees with it. We needed to be able to voice some of our concerns in a way that would allow the hospital staff to understand.

Once Nan had (finally) sat down, other concerns were voiced by the present members of family. These included her struggles with sleeping in bed (she sleeps in her recliner chair as she cannot lift her legs to get into bed), as well as struggles organising medication, needing night visits from carers (but these not being available), problems with incontinence, problems controlling her type 2 diabetes, the help she needs to shower, and other help she may need since having a major operation (a full hip replacement).

Naturally, my nan disputed a lot of things and we had to explain to her why we had these concerns. The discharge nurse, occupational therapist, and social worker tried their best to explain too. The occupational therapist had a list of equipment she could order to make Nan's life a little easier. This included a shower chair with a back, a commode in her bedroom, a grabber (as she is not allowed to bend from the hip more than 90 degrees), a perching stool, a key safe, and equipment to help her lift her legs. Nan rejected a lot of this equipment, saying she didn't need it, but she did agree to the shower chair, perching stool for the kitchen, and key safe.

The next topic was help with care. The occupational therapist explained that Nan would have visits 4 times a day, for up to 6 weeks, from the Enablement Team. This is a team of carers who would observe and encourage Nan to do what she can for herself, and help her with things she cannot do. This help is free, and is designed to rehabilitate Nan so that she is able (with the help of carers) to look after herself in the community. Nan didn't see the point in this, as she believed the carers at her care home would do everything whenever she asked. This is not the case however, as the care home she lives in is vastly understaffed, and does not provide night visits. The Enablement Team unfortunately do not offer night care either, so would see my nan first in the morning.

Once everything had been agreed and clarified, the meeting came to an end. The family were left for a few minutes, to discuss things amongst ourselves, and this included explaining things to Nan again. She seemed to accept what was going to happen, if reluctantly.


Yesterday, Nan was discharged from hospital, and brought home by hospital transport. We were told the transport would arrive at 12, and it'd be around 12.30 that she would be home. What actually happened was the transport arrived at 1, and dropped Nan home around 3! My dad was left waiting 3 hours to let the transport staff (and my nan) in the flat. Luckily, she'd had lunch before being discharged, so didn't complain about that. The Enablement Team arrived a couple of hours after that. I am waiting to hear how she is getting on with this team, so I will keep you posted!

Wednesday, 14 March 2018

CBT for Anxiety Session 3 - Facing my Fears

I had my latest CBT session on Monday, last week. On that day, as well as the stress and worry about my Nan, I'd had a shock after finding out a close friend of mine was transphobic. This seemed very out of character for him, but the post he had supported was so obviously abusive that I had no option but to block him.

Losing friends in any way is very distressing for me. I may dissociate or panic, my mood will plummet and the whole thing will play on my mind for at least a few days afterwards. Needless to say, I was on the verge of a panic attack whilst on my way to therapy. I was looking forward to therapy, however, as I really needed to vent how I was feeling.

Therapy itself went very well. Surprisingly, I didn't cry (although I was pretty close!). We talked about losing friends, as well as my Nan and her declining health. I found my therapist quite validating. She understood why I felt the way I did, and was reassuring as well

After all that, we moved onto the main reason I wanted CBT; to get out of the house more. We talked through the topic of Panic, and discussed the booklet she had asked me to print off. I'd filled in the activities I was asked to complete. I'd mentioned my symptoms of OCD as well. She wanted to know more, and whether it was still a problem for me.

I'm sure I've written about my OCD before, but cannot find the post right now. I may edit and add the link if/when I find it, but for now I will describe the obsessions and compulsions I have.

The first time I started having symptoms of OCD, I was about 13. I was being verbally/psychologically bullied badly and was looking for something/someone to help. I didn't talk to friends about it, as one had spoken to the bullies (in a well meaning but misguided way) and this had made it worse. Teachers didn't help either; arranging a meeting where I'd have to speak out in front of the bullies which of course meant I didn't have the courage to say much.

At the time, I and a few friends had started to dabble in Paganism. It was on a very superficial level, so I couldn't explain what it is to you in detail. We learnt blessings and prayers though, and I thought that saying these blessings/prayers may help to protect me from the bullies. It eventually got to a point where I "had" to start them at exactly midnight, and had to repeat them three times every night. If I had a bad day the next day, rather than blaming the bullies, I blamed myself for not saying the prayers/blessings in the "correct" way. I also carried things (which I saw as lucky charms) in certain pockets of my blazers. I would panic if I could not find these things straight away and I would hold them throughout the day for reassurance.

Once I left school and the bullying stopped, these compulsions stopped. Later on, I started to get an overactive bladder and this really heightened my anxiety and need for control. I would "go" at least 4 times and each time, I had to wipe 10 times. I would count to 10 each time. This would lessen my anxiety slightly but for the rest of the day, needing the toilet would be at the forefront of my mind.

My compulsions are much less, since I've been on Sertraline and since I've taken Vesicare for my overactive bladder. I don't spend as much time in the toilet, so I don't see these symptoms as a real problem now. Other than this, I do some things in three's but I don't think they are done strictly enough to be called compulsions.

I explained all of this to the therapist and she was reassured that I don't really fit the criteria for OCD any more. I can't tell you how relieved I am that these obsessions and compulsions don't have so much control over me anymore!

Anyway, onto my other anxiety problems, e.g. getting out of the house. At the moment, my limit is to occasionally walk from my house to the local shop, and do a small shop by myself. I have gone from being on the verge of/having a panic attack to just feeling moderately anxious. I'd say this is progress! I do want to be able to travel further by myself though. My therapist gave me a worksheet with a table to fill with distressing situations. For my homework, I had to list the distressing situations I wanted to work on. I'd have to rank them from most to least distressing, as well as rating them from 0-10 (0 being "no distress" and 10 being "extremely distressing"). I have listed as many situations as I can for now, and I will write them below:

  1. Do some volunteer work (10/10)
  2. Go to a Slimming World group with mum (9/10)
  3. Take a train somewhere, alone (9/10)
  4. Take a bus into town, alone (9/10)
  5. Take a taxi into town, alone (8/10)
  6. Take a bus, with mum (8/10)
  7. Take a taxi to therapy, alone (7/10)
  8. Take a taxi with mum (4/10)
  9. Walk to the shop, alone (3/10)
There are various reasons why each of these is very distressing or not so distressing. It depends on factors such as, how familiar the destination is, how busy the destination is, how busy the mode of transport is, how long the journey is likely to be, how easy it is to get out of the situation etc. For example, walking to the shop alone doesn't cause too much anxiety now as I know the journey and the destination well, I tend to know how busy the shop is at certain times, I know how busy the journey there is likely to be, and I know I can escape the situation whenever I like, without anyone noticing. On the other hand, going to a Slimming World group means going to a destination I don't know well, with a big group of people I don't know, I may be required to speak up, I'm expected to last the duration of the session, and getting out of the situation early wouldn't go unnoticed. 

I am so fed up of being controlled by my mental health however. I want to be able to face my fears and get to a point where I realise nothing terrible is likely to happen. With the help and encouragement from my therapist, I hope to at least tackle some of these distressing tasks.

Wish me luck!

Thursday, 1 March 2018

Family, Social Services, and a Whole Load of Stress

I'm sorry for my silence recently! I've had a lot going on, mainly with family and illness. I will try to explain this in a somewhat coherent manner.

A couple of months ago, my Nan went into hospital for a total hip replacement operation. She has other issues, such as Arthritis all over (we're not sure which type), a worn out total replacement on her other hip, Type 2 Diabetes, double incontinence, memory problems and could potentially have the onset of Dementia. The nurse at the hospital originally said Nan would be in for 7 days, but this was before all the other issues were noted.

The operation went as planned, but due to these other issues, she is still in hospital. As well as all of this, she contracted Norovirus, so has had to stay in another 2 weeks regardless. Despite extra infection control measures, visiting members of the family (including myself and my parents) caught Norovirus too! Because of this, we've not been able to visit Nan for over a week, which is a worry as she does not cope well by herself. She doesn't mix well with other patients and will only "socialise" (to use the word very loosely) with family members.

Another issue is the care home she lives in. It does not have an adjustable bed, so Nan spends 24 hours a day in her adjustable chair (bought by herself years ago). She sleeps in that chair, badly, and due to such poor mobility, is almost completely sedentary.

She has carers in, but she has cut their hours down to the bone, as she thinks struggling on her own (even with her risk of falls) is acceptable. The care she does get is not adequate in the slightest. Before she went into hospital, she was getting care for 15-30 minutes in the morning; which mainly consisted of a very quick wash from her chair. She did have carers come to take her laundry now and again, but clothes etc often came back still dirty. It appears she is also paying for more care than she is actually receiving.

The care home itself is vastly understaffed. At night, you are lucky to get two care assistants and in the daytime there are often only two carers covering the whole home (which has quite a few flats as well as bungalows attached to the home). Nan needs two carers to help her to shower, but the home is unable to provide this, so Nan's hygiene is unfortunately quite poor.

Onto Social Services! Well, they have been involved to assess Nan's needs and whether the care home is suitable for her anymore. My family have agreed that it is now a nursing home that Nan needs because of the amount of personal help she requires. Dad has been speaking to a social worker, but despite all of our concerns, the social worker is under the impression that the care home will be able to provide the levels of care required. This is something we struggle to believe but it looks as if we'll have to trust the care home to do this, and if it is not done then we are going to have to find a nursing home for Nan.

In the meantime, next week there will be a meeting with the care home manager and an occupational therapist (as far as we're aware?) at Nan's flat, to see what other equipment she needs before being discharged. There will also be a bigger meeting with whichever relatives are available, at the hospital, to come to an agreement as to what Nan needs and whether she will be ready to be discharged soon.
One of my uncles does have the legal right to invoke Power of Attorney, so we need to discuss whether this is something that needs to be done yet.

We want her to be happy, but we also want her to be safe. It is very difficult and has caused arguments as Nan is not good with change and is very home sick. I will do another post once everything is finalised.

Friday, 2 February 2018

CBT for Anxiety Session 2 - My Past

(TW: mentions of self harm, suicide, sexual abuse, psychological abuse, and diet)

I'd had a bad couple of weeks between session 1 and session 2 of CBT. I did, however, manage to do the homework my therapist set for me. This was to read and print off a booklet about Panic as well as doing an anxiety based thought record. I filled in quite a few entries for this record, so had a lot to talk about with the therapist. I also wanted to monitor my mood swings in order to help with filling in the questionnaires at the start of session 2 (as well as for my own benefit). One of my best friends suggested this and I found it a very helpful idea.

I used a mood diary template; where I recorded levels (from 1-10) of stress, mood, energy, and how many hours I'd slept. I also commented on my moods and things that had happened that day. I found that I had to add at least 2 or 3 entries for these topics throughout the day (except hours slept of course) as my moods changed. I found my moods changed rapidly and extremely in response to things that happened. I had a couple of days, for instance, where I had read too much into some things and got it into my head that some friends had got fed up of me. This resulted in me feeling very paranoid, angry, upset, and anxious to the point that friends noticed and reassured me. Reassurance helped my mood a bit, but did not completely alleviate those thoughts and feelings.

Moving on to my therapy session, I was a few minutes late but the therapist didn't seem to mind. Once we'd sat down, she gave me the usual questionnaires (see my previous post) as well as a Risk Assessment questionnaire. This yes/no questionnaire asked about suicidal and self harm thoughts, as well as plans and attempts. I did answer yes to some of these, so my therapist wanted to talk about this first. We moved on, once she was sure that I wasn't currently planning to end my life.

We next talked about the thoughts I have about myself, my family, strangers, and going outside. This brought us to various things that had happened in my past, and how they affected my thoughts, feelings, and behaviour nowadays.

Two particular things that were major factors in my mental illnesses were the bullying I experienced at school, and the psychologically and sexually abusive relationship I had when I was at university. These really affected how I saw, and still see myself. I don't see myself as a person of worth, I think of myself as "wrong" no matter what I do or say. I blame myself for everything and punish myself through regular self harm. Long story short,  I don't like myself very much. My therapist commented that I speak about myself very negatively.

The next topic we went onto was lifestyle. What did I do throughout my day? What is stopping me from working? Do I go out much/socially? I mentioned that this past couple of weeks had been difficult and I'd barely been out of the house at all. Partly this was because I felt very demotivated and low, but it was also the Agoraphobia making me avoid situations that make me panicky and anxious. My therapist said that I needed to go out more, and try a short walk at first. I pretty much promised her that I would try to go out more. I also explained why I didn't work, but that I would like to if/when I am ready. I explained that this work would have to be very flexible and accommodating as I have energy "crashes" in the afternoon and need a 2 hour nap when I get too exhausted. Ideally, this job would be a work-from-home one (not easy to find!).

We then went onto general health. Did I exercise much? What is my diet like? Can I cook for myself? I told her that my Fibromyalgia and Hypermobility Syndrome do cause a lot of pain, fatigue etc so cooking is difficult and I need help when cooking from scratch. I spoke about the kinds of things I ate for each meal and that I was doing Slimming World online. Overall, my therapist decided my diet was relatively healthy. She also mentioned how certain inflammatory foods could make my Fibromyalgia flare. I had read up about that when initially diagnosed, but have forgotten now, so will look into it.

The session was coming to a close by this time, as we'd been talking about a lot for a while! My homework for this time is to find 3 things each day that are positive (it could be about my day, myself, something I'm looking forward to or that someone said to me etc). I need to work on being compassionate to myself. She also wants me to carry on with the mood diary and fill in the activities in the Panic booklet.

So far, I'm liking my therapist (apart from her questions about getting back to work soon) and the sessions are at least giving me time and space to vent. I did find this session very emotionally and physically exhausting, however, so had to nap for a while once I'd got home.

My next session is in 3 weeks time, so I hope to write a post on a separate topic before my session 3 post. I hope this post is helpful in the meantime!

Thursday, 18 January 2018

CBT for Anxiety Session 1 - The Assessment

(TW Suicide and Mention of Sexual Assault)

I've decided to try Cognitive Behavioural Therapy again. This time, I want to focus on my anxiety issues with travelling alone. I've had CBT 3 times in the past, but without a specific goal so this is partly why I think it didn't work for me. I didn't know what exactly I wanted to achieve, apart from a lessening in symptoms. Previously, the focus was on my Depression and suicidal ideations. I found CBT unhelpful for this however, as I felt my issues were more complex than this type of therapy allowed for. At the time, I didn't know I had Borderline Personality Disorder however, and this is probably why CBT didn't work for me. Recently, however, I felt trying CBT with a focus on one of my anxiety disorders, with a specific goal/problem would probably be more effective.

After a self referral, a telephone assessment, and a few months on the waiting list, I had my first session earlier this week. As it was session 1, it was more of an assessment however. The therapist initially gave me the standard questionnaires to complete (PHQ-9, GAD-7, phobias and work and social adjustment scale (see page 5)) Once she had looked through my responses, she discussed my suicidal thoughts with me to find out whether I'd attempted in the past or made plans, and if I had plans to end my life right now. I reassured her that although I used to have quite strong suicidal thoughts, they are more passive now and would only be likely to become active if I were to suffer a sudden loss of support or someone from my support network (such as a close friend, parent, or my cat).

She then went through my diagnoses (both physical and mental) and asked how I felt about my BPD diagnosis. I said that the assessment for it was one I'd asked for, and although I did not like how stigmatised this disorder is, I'm relieved to put a name to my problems and to be believed. I mentioned to her that I had not been referred for Dialectical Behavioural Therapy when diagnosed (as this is the standard treatment recommended for BPD). She noted that I had been discharged from Secondary Care soon after my diagnosis, and she was very surprised about this. She told me that Primary Care mainly does CBT and it is Secondary Care that would carry out DBT.

We then went on to my anxiety problems; primarily anxiety with travelling alone. I explained how I felt when trying to travel alone, and problems I've had in the past that I think may have contributed. I used to be bullied and harassed on the coach to school for example. Because it happened for so many years, I expect it to happen on public transport (such as a bus). When I was 17, I was sexually assaulted at my local bus station. Although it has been 11 years, I still can't sit in a bus station by myself. Lastly, I had a panic attack a few years ago when changing trains, because I could not find the correct platform. It was so intense and scary that it put me off taking trains.

I also spoke about how often I have racing thoughts, and that it can get too much to cope with. The therapist asked how I would try to manage this, and I said through distraction (gaming mostly). She said that I was relying too much on distraction and mindfulness may help me to "sit with" my worries. Hopefully this will help me to face my fears and come up with solutions that could calm my anxiety down.

By this time, the session was running to a close. The therapist gave me some links to a worksheet for recording times I'm anxious and why. She also gave me a link to booklets online that described anxiety and panic. I'm to read these, fill in the worksheet and bring it to the next session (in a fortnight).

I hope this blog post has been helpful for anyone considering CBT for anxiety. My next post will be about Session 2.


Sunday, 31 December 2017

Self Care New Year's Resolutions

The end of a year can be very difficult for many people; bringing up mixed emotions and placing expectations on us to think over the past year and make resolutions for the new year.

I find resolutions difficult to make/stick to, and the guilt and failure I feel when I don't stick to those resolutions can be very damaging for my mental health. Mental health problems, such as Depression include symptoms such as guilt and feeling like a failure, so another dose of that is definitely not welcome! I have general aims I'd like to meet, but no strict resolutions. I decided to put them here, in case they may be helpful for you. Of course, you can tailor them to your abilities/what you feel able to cope with!

1. Be kinder to myself.  Specifically, I want to try not to say such horrible things about myself and focus on the more positive things I can find. I can't be all bad, right?!

2. Do my best to set boundaries. If I am not comfortable with something, it's ok to say no! If I am finding a friendship is becoming toxic, it is ok to step away and even end that friendship if I feel able to.

3. Stay connected to loved ones. I am terrible at starting conversations. I know I expect people to talk to me first, and I feel very alone if no one does even for just a day. I want to take that step and say hello to someone first.

4. Let friends/family know if things aren't going well. I don't need to bottle up my physical or mental health problems. If I'm in pain, it's ok to say! If I'm feeling down, it's also ok to say! That bit of support I hopefully get in return can really help my mood.

5. Take time for myself. Although I shouldn't isolate, it's ok to take some time out for myself. Being round people can be exhausting and overwhelming, so it is a good idea to have that time and space for myself.

6. Do a nice thing for myself every day. This could be watching a movie I like, playing a game, treating myself to a favourite snack, or putting on makeup and taking a few selfies! Whatever I consider a positive, mood lifting thing counts.

7. Stay hydrated! I know I don't drink enough water, so I often try to aim to remedy that. Apart from other drinks, I manage half to a whole 500ml bottle a day. I want to double that.

8. Try not to put too much pressure on myself. There's quite a few resolutions here, but I need to remember that these aren't set in stone. They are just guidelines, suggestions even. If I only manage one or two next year, that's fine! I'm not a failure if I can't manage to meet all of the above.

Are you setting any resolutions for 2018? Comment below with your suggestions!

Whatever you do, I hope next year is the best year so far for you. See you then!

Sunday, 10 December 2017

Please Help my Friend with his Independence!

I have a close friend called Daryl, who is one of the kindest, most supportive and most generous people I've ever known. He volunteers, does a lot for disability sports and manages a charity that helps get disabled people into sport.

He does all this, whilst living with Marfan Syndrome and Epilepsy. He needs more support than he's getting right now; which is why I am asking for your help. Daryl lives with his brother, and they are both wheelchair users. They have been living in a bungalow which is not suitable for their needs. It is not adapted and what they really need is to be able to move into a bungalow that has been specially adapted. Daryl also needs a specialist wheelchair, so that he is able to move about freely whilst using the strength that he has left.

This, of course, comes at quite a cost, so he has had to set up a fundraiser. His target is £9000 and he has raised £1505 so far. He really needs as many people as possible to donate and share so that he can reach his target as soon as possible. This really is a life-changing amount for him and if you could donate just £5, it would really really help.

I've embedded the link to his fundraiser below. Please donate what you can, and share far and wide! I know he will appreciate this so so much.

(If the above link doesn't work, then please follow the following link to access Daryl's fundraiser: https://www.gofundme.com/funddaryl )

Thank you so much!