Monday, 31 December 2018

Self Care, Distractions, and a Difficult Time of Year

(TW: Mentions of self harm, overdose, and hallucinations)

If you read my last post, you'll know that I've been through a very difficult time recently. I have struggled with Depression, distressing thoughts, panic, self harm, overdose, and hallucinations. Crisis team were lovely every time I phoned them, and I had to have two calls with them after the Community Mental Health team were unable to give me any help. CMHT just gave me advice to see my GP for a meds review, and to ring the charity numbers they had given me for bereavement and domestic violence.

I left that appointment feeling very disheartened and lost. I felt abandoned by the mental health team, and I felt there was no point in ever ringing them again. I had reached my limit for mental health care with that team, I would have to look elsewhere. I don't blame the team. They did what they could, with the very little resources the government has left them.

I rang my GP and had an urgent appointment that same day. I started to cry and panic as I explained everything, but luckily my GP was very supportive, compassionate, and a good listener. I was told to increase my dose of Pregabalin, as this can apparently help with anxiety and depression. I was also (reluctantly, but I gave good reason to ask for this) given a small prescription for Diazepam, to take on my most distressing days.

Another thing that triggered the most recent mood swings and distress was a dreaded white envelope through the post. I was to be reassessed for ESA. I thought reassessments had stopped for people with long term conditions, but maybe they have now changed those rules? I filled in what I could; using online guides and previous scans of my last ESA form. I also rang my GP today and asked for a supporting letter. She did not say what she would write on it, but she did mention something about referral letters and my notes. Hopefully this means she will attach extra evidence. Anything to back up my claims about my health is useful.

If you are to be assessed/reassessed for ESA, and have received a capability for work form, I highly recommend visiting the website Benefits and Work. This website gives a large amount of information and complete guides for filling in various benefits forms, attending assessments, appealing, and attending tribunals. I also recommend becoming a member (just £19.95 for a year) as this gives you access to much more specific information.

Today, I am struggling to fill in my form, despite the information I have to help me. Forms like this, ask you to talk about such personal information about physical and mental health that it can be quite daunting and distressing. I am focusing on all the negatives, the struggles, the pain, the mental distress etc and it is no wonder that I'm feeling all of these negatives intensely. I have been dissociating ever since I started filling in the form today.

As well as dwelling on this, I have been scrolling Facebook and feeling jealous of all the achievements my friends have completed. Whether it be a career change, travelling the world, a wedding, an engagement, an anniversary, or a birth, the world seems to be turning very quickly, and I feel as if I've been standing still. It is really hard to focus on my own achievements when, in comparison, they seem so minute. I wrote a status about this, which I will post below:

I'm trying not to compare myself to other friends who have achieved so much this year. By now, I would've loved to have got my Doctorate in Clinical Psychology, be working in mental health, be married maybe with a child on the way. Instead, my illnesses persisted, and I guess the biggest thing I've achieved this year is surviving it. Shout out to everyone else with that same achievement and rest in peace to those who did not survive this year 

If you feel that you have not achieved much/anything this year, I assure you, you have. You survived this year. You got through the days, somehow. And I am so glad you got through it. You deserve to have a happy life; achieving things (no matter how small) at your own pace. You matter, you are valid, and you deserve to be happy with life regardless of what you can or cannot do. You do not need to be productive to be a human being deserving of love and respect.

I will be having a quiet New Year's Eve tonight. I will have a prosecco or two with my parents, and I will be continuing doing lots of self care to get me through.

Whatever you do, I hope your New Year's Eve is as lovely as possible, and I hope next year will be a much better year for you. Goodbye/Good Riddance to 2018, and please, 2019, be a good one!

xxx



Monday, 24 December 2018

Mental Health Team? What Mental Health Team?

(TW: Self harm, Suicide, Hallucinations, bad mental health service experiences)

I have had a truly awful day today.

Recently, my mental health has relapsed and I've been severely depressed, distressed, even suicidal (it's been a while since I was last suicidal). I have had intense suicidal and self harm thoughts, as well as paranoia about various people and organisations *coughDWPcough*. I have self harmed regularly, had urges to overdose on all my medication, and I took a small overdose the other day.

As well as this, I have had an hallucination. I was in bed (awake, not dreaming) and I saw a large black and red beetle climbing up my bedroom wall, then disappearing into the ceiling. I have had similar hallucinations in the past; very rarely however. Sometimes I have believed they were real, other times I have known they couldn't possibly be real.

I called my local crisis team about three times, bursting into tears down the phone and letting everything out. They knew everything, and had passed the information on to the Community Mental Health Team.

I went to my appointment today, partly feeling it was pointless, partly convincing myself that they will help and hopefully I will get more therapy and a medication review.

Unfortunately, I have received neither.

I explained everything again for them, filled in the paperwork (PHQ, wellbeing etc) which showed that I was severely depressed and not coping well at all. I answered their questions about trauma, triggers, home life etc. The CPN then said that I'd been there a couple of times before with similar issues and had received help both times. She suggested I call Women's Aid (for the abusive relationship I'd been in) and Cruse Bereavement (for the traumatic abortion 10 years ago) and asked if I'd considered Primary Care. I said that they believed I was too complex for them, but I would try.

Other than that, she reiterated that I needed to rely on my own resources, and be more proactive about using the skills I've learnt from therapy. I said I'd tried and struggled to do this, and felt that I needed more support.

Unfortunately, she told me that she could not offer any more support, because a while back the government cut back the mental health team's services and resources quite substantially, and there simply wasn't anymore help available for me. I burst into tears after realising they simply couldn't help. I felt as if I was on my own and that this mental health team barely existed at all. It was in ruins. The CPN even described it as a service that just puts a sticking plaster on service users, before sending them off again and possibly signposting them to other places, charities etc.

I knew resources were tight, but the realisation that there were barely any resources at all was upsetting, frightening even. I feel scared for people in a worse position than me.

We are fighting that voice in our head; telling us we are Bad and do not deserve help. We fight the urges to kill ourselves. We have that little bit of hope that there will be some help there if we ask for it. People keep telling us to reach out anyway. We reach out. We pick up the phone. We are given a face to face assessment and suggestions to distract ourselves, have a cup of tea, have a bath, anything to get us through the days until our appointment.

Appointment day finally comes. It takes all of our strength to tell the CPN everything, we let go as much as we can. We let ourselves be vulnerable in front of this person and at the conclusion of the assessment, there is no help from this team. Sure, we are signposted to other places but the main place that should be there to provide us with something with a chance of helping us cope, improve even, simply does not exist anymore. We are sent on our way with the promise of a letter through the post. We are discharged back to a GP who may not know much about mental health, so cannot help much.

This is the reality. I am not the only one. Something NEEDS to change.

Friday, 21 December 2018

ENT Appointment for Dizziness

This morning, I finally had my appointment at the ENT (Ear, Nose, and Throat) department. This was primarily for the dizziness I've experienced for years; which suddenly worsened around 4 months ago. I get this dizziness (amongst other symptoms) when standing up from sitting or lying down, or from sitting still for a prolonged period of time. I also feel as if I'm going to faint.

Other things, such as physical exertion or overheating, can make it much worse too, and I also experience palpitations, shakiness, nausea, and headaches.

So far, my GP has had blood tests done (all normal) as well as an ECG (normal), and had referred me to physiotherapy to see if I had a neck problem that was causing dizziness. I have neck pain anyway, but don't think this is connected to the dizziness. Needless to say, physio couldn't do a lot for me, so discharged me after an examination and after handing me a sheet of exercises to do. You can read more about my physio appointment here.

Anyway, back to the ENT appointment. Thanks to traffic, I was a few minutes late getting to the department. Thankfully, it wasn't difficult to find, but I had to rush. After about a 10 minute wait, a member of staff (a nurse or audiologist possibly?) called me to a room for a hearing test. This involved wearing headphones and having difference frequency/volume beeps played into each ear. Everytime I heard a beep, I had to press the button on a joystick shaped object that I was given. Some beeps were very hard to hear, and sometimes it was hard to distinguish between that and general computer noises, but I felt I'd done alright. I hadn't had a hearing test for as long as I could remember, so I was expecting to have some issues now.

Once that was finished, I was asked to sit in the waiting room. I was soon called to the doctor's office. I think it was a registrar that I saw, as it was not the consultant named on my appointment letter. He introduced himself, and I promptly forgot his name (typical me!) then he asked what had brought me here today.

I explained about the dizziness and faintness, and he asked what that felt like to me. The dizziness, I explained, felt like the room was spinning. The faintness, like I was about to collapse. I also had problems with balance, that were made worse by the dizziness and faintness. The doctor said that the faintness was not something ENT could deal with, but they could hopefully investigate/treat the dizziness.

He next asked me to let him examine my ears. He said they looked fine to him, so no worries there. He then asked to check my balance by getting me to stand without my stick (I had to keep steadying myself by placing my hand on the desk repeatedly), make marching movements with my legs; lifting them up as high as I could. Next, he asked me to walk heel to toe from my chair to the window, and then from the door to my chair. Both times I stumbled and nearly fell against objects close to me. I was also very wobbly. Once I'd sat down, the doctor conducted some neurological tests; including pushing my arms up against his, following his finger with my eye, then touching his finger, then my nose and repeat a few times as quickly as I could. I just about managed this, but really had to concentrate and was very shaky. He picked up on the shakiness and asked if it was something I experience often. I explained it always happened after any physical exertion. Lastly, he asked me to relax as much as I could, then focus on a spot on the wall, while he moved my head from side to side, slowly then quickly. After a few attempts, he managed this. I was focusing so much that I tensed my neck right up!

After these tests, the doctor asked about medication I take, any allergies to medication (Amoxicillin and Naproxen), current medical conditions, and any surgeries (I've had none). He told me his findings were that my hearing was normal, my ears were fine, but he wanted to investigate the dizziness more thoroughly. He said he would refer me for Vestibular tests, so to wait for an appointment letter for that and then follow up again with him soon. He also said that I should stop my anti sickness medication Prochlorperazine (Stemetil) as this would make the dizziness/faintness worse. He told me that something like Cyclizine would be a better choice. Next, he said I should be referred (probably to Cardiology) for the faintness and that he would write to my doctor to mention that and the anti sickness medication. Finally, he gave me a sheet with exercises to do, in the hopes of relieving my dizziness.

Overall, I felt the appointment went well! I left the hospital feeling well informed, taken seriously, I had clear information on what to do/would happen next and I felt the doctor had been thorough.

My next post will likely be about my latest CMHT assessment. My mental health has declined recently, for various reasons, so I got in touch and cried over the phone to the Access/Crisis Team. I will give much more information in the next post I write.

Depending upon the follow up appointments CMHT give me (if any), my post on the Vestibular tests may or may not be after that.

Wednesday, 12 December 2018

More pain *sigh*

(TW: Meds)

As the weather gets colder, my chronic pain gets more severe. Even on the highest dose of Tramadol (moderate release) I am not getting enough pain relief. I've been suffering breakthrough pain. In a nutshell, this is pain that is not relieved by my usual painkillers. It "breaks through". I tried dealing with it by using hot compresses, TENS machine, CBD oil, and even some old Codeine that was still in date. Most of that didn't work, and the hot compresses only helped a bit, for the duration they were on me. I vented about it on social media and some good friends advised I see the GP.

Another problem I had started three days ago. I woke up with cramp in my left calf which hasn't gone away. I mentioned this to my GP too.

I saw the GP this morning. It was an uncomfortable wait, thanks to the pain and cramping. Eventually I was called through. I wondered whether a quick release opiate (such as normal release Tramadol) could be added on top of the moderate release Tramadol. Unfortunately, she was worried about the risk of overdose, so decided to look for something else.We went through my medication history to see what I have tolerated in the past, and finally decided on either Pregabalin or Gabapentin, as these are specifically licensed for Fibromyalgia. I've been on a low dose of them before and tolerated them, but not found relief. My GP wanted to see if I could start on the same dose then titrate up, and hopefully it'll work. I'm slightly skeptical, but willing to give it a try. I'll blog about whichever one I try (I forget which she decided on) and let you know if I notice any difference in my pain severity. She did actually ask how severe the pain was on a scale of 0-10. I said it tended to be a 7 or 8, so bordering on the severe end. I told her it affected my functioning, and I wasn't able to do the exercise I needed to. She did tell me to try though.

The second thing I needed to tell her about was the cramping in my left calf. I told her how it'd been happening for 3 days now and hasn't subsided at all. She didn't seem worried to be honest. She asked if I'd tried various things such as stretching exercises, hot compresses etc. I told her I had but didn't have any luck. She examined my calf (ouch!) and said it didn't seem very tense compared to the other calf.

Once we'd sorted out my prescription requests, that was pretty much it. I think it was a fairly successful appointment, and the result was what I expected really. I would've been very surprised if she'd prescribed the normal release Tramadol, or Oramorph (which would be wonderful for pain relief but I highly doubt would be prescribed unless I was on the floor screaming in pain).

 My next post will likely be about my ENT appointment for dizziness, so stay tuned!

To all my fellow spoonies who experience chronic pain, I hope you are able to stay warm and dry, with minimal pain xxx

UPDATE:

It was Pregabalin that I was prescribed. I've been taking it for a couple of days now. So far, I haven't noticed any pain relief but I'm only taking 150mg per day at the moment. It is making me quite foggy and drowsy though, but I think I can cope with it. Please comment below if you've had experiences with Pregabalin for Fibromyalgia pain. Has it helped you? Were the side effects easy to cope with, or too much?

Thursday, 22 November 2018

Physio for Neck Pain and Dizziness

If you read my previous post you'll know that I have been having some new and worsening symptoms over the past few months; namely dizziness, fatigue, and some neck pain (although I put that pain down to a fibromyalgia flare up). After various tests came back negative, my GP referred me to an ENT specialist and for physio. My ENT appointment is next month, but I had my physio appointment a couple of days ago.

When I signed in at reception, I was given some paperwork to fill out. I had to rate how severely the pain has affected certain activities, and whether I did exercise other than general housework/daily tasks etc in the past week or so. At first, I was thinking of my pain as a whole, but of course they only needed to know about my current problem i.e. neck pain.

When I was called through to see the physiotherapist, I found she was the one I'd seen about my hip bursitis a while back. She asked how I was, then asked me some questions about my neck pain and dizziness. She then got me to sit on the bed while she examined my neck and shoulders. She noted that I had a lot of tension there; which she said is common for people with Fibromyalgia (one of my diagnoses). Next, she asked me to do some movements, to check stiffness and pain when turning my head in different directions. Other than some stiffness when turning my head left and right, there wasn't much else that was noticeable. I explained that I get dizziness when turning my head left to right, and also find I have this weird scratching noise as I turn. I also told her that the dizziness was not only when I do that, but also when I stand from sitting, or sit up for a while. She asked if I'd ever fainted due to this, and I explained that I hadn't, but I'd been very close.

After this examination, she said that she believed the neck pain was due to my Fibromyalgia (which didn't surprise me) and that unfortunately physios can't treat that condition anymore. It is down to GPs and Rheumatologists. I did have a Rheumatologist for my initial diagnosis, but he told me he couldn't do anything else for me, so I don't actually have a specialist for that (or my Joint Hypermobility Syndrome come to think of it).

The physiotherapist gave me a few booklets for Fibromyalgia, Joint Hypermobility, and Neck Pain, which had some exercises in. I'm to keep doing them, but she doesn't need to see me for a follow up.

When I got home, my pain (especially in my neck and shoulders) was horrendous. It had started up ever since the physical examination, and kept getting worse. I took my painkillers (tramadol slow release) but they didn't do anything unfortunately. I really needed something that would work instantly. My pain is a little better today, and I've had a couple of things delivered to hopefully help. These are an unscented wheat bag to go around my neck and shoulders, and a bottle of orange flavoured CBD oil from https://okcbd.co.uk/ . I have only had a couple of drops today, so cannot say if they are working yet, but in the next week or so, I think I'll write a review on my blog, for anyone thinking of trying this oil.

I'll leave it there for now, I hope you are all as well as possible!

Tuesday, 23 October 2018

New/Worsening Symptoms

I thought I'd write another quick updates post as, for the past 2 or 3 months, I've been having some suddenly worsening symptoms. My fatigue has been very bad (to the point where it's taking all my effort just to stay awake) and I've been having a lot of dizziness when sitting up or standing for a while.

I'm also finding that I crave salt, and after eating carbs, my dizziness worsens. I keep getting feelings that I'm going to faint too, but I've only ever fainted once in my life (about 5 years ago).

Other things that make my dizziness worse are:


  • overheating
  • turning my head
  • overexertion
  • pain
I've seen the doctor twice about this, have had blood tests (all normal) and an ECG (normal). My GP has referred me for physio (as she thinks I may have a neck problem) and to an ENT specialist to see if my hearing is affecting this. 

I did ask if my symptoms could be caused by a condition called Postural Orthostatic Tachycardia Syndrome (POTS) and the GP said she doesn't think so, because my ECG was clear, but she will refer me to a Cardiologist (who will assess me for this amongst other things) if ENT and physio can't help much. 

I have my first Physio session next month, but I'm still waiting for my ENT referral letter. I'll update my blog accordingly.

UPDATE: My referral came through! On 21st December I have an appointment at Russells Hall Hospital in the ENT- Neurotology department. I'll write a new blog post when I start physio and then when I have my first ENT appointment. Please comment below if you've been referred to a similar department for dizziness. How did it go? What tests did they do?

Thursday, 4 October 2018

Airport Assistance - My Experiences

On 13th September, my parents and I went on holiday to Gran Canaria. We flew from Birmingham Airport. Having had varied levels of service from Airport Assistance, I decided to live tweet my experiences in the airports and on the plane both on the way, and coming back from holiday. I will expand on these below:

Outbound - Birmingham Airport to Las Palmas Airport

As we arrived at Airport Assistance, there was a bit of confusion as all three of us needed assistance. Staff, however, had been friendly and helpful so far. Dad and I were taken through security fairly quickly, with no issues. Mum was looking for her bags though, as apparently she went one way and they went the other. My Dad and I were taken from security to Number 1 Lounge. We weren't happy that we were separated from Mum. The staff were very impatient though. Eventually, we all met in the lounge with well deserved drinks! There wasn't much time until we were taken to the gate so we hoped the food we ordered would arrive asap. Thankfully, we didn't wait long for it, and had a bit of time before being collected by assistance staff.

The rest of the journey went pretty smoothly and at Las Palmas Airport (Gran Canaria) we were whizzed through quickly and made good time for our taxi. It was the journey home after the holiday that was more problematic.

Inbound - Las Palmas Airport to Birmingham Airport

My parents and I arrived at Las Palmas Airport (Gran Canaria) in good time, a few hours before our flight was due to depart. Finding the right check in desk was quite confusing though; with not a lot of information. We eventually found the fast-track queue for people needing special assistance though. We explained that all three of us would need assistance to get round the airport and onto the plane. An airport wheelchair each for dad and I, and mum had her own wheelchair. The staff member was fine about this and we didn't have to wait long to get assistance. All good so far.

Getting through security was quick and straightforward. My piercings didn't even set off the alarm! Security were helpful, respectful, and efficient. We were whizzed through to the special assistance area before you go to your gate. All the other special assistance staff were fine, apart from a very angry and stressed out manager. He snapped at staff members and got confused over who was together on which flight. This confusion did worry some of the people needing special assistance.

Eventually things were sorted and we were taken straight to the plane, using the ambulift. The staff ensured everyone was secure before the ambulift set off. Some pretty robust attachments kept mum's wheelchair secure too. There was a bit of a wait for the plane's door to be opened, but we were boarded before the non assistance passengers. That's where the straightforward-ness stopped.

The Thomas Cook flight attendants weren't very professional or organised. The flight departed around 9.30pm. We were due to have in flight meals, but were not served until midnight. I was feeling ill as I hadn't eaten since 1.30pm so dad had to let staff know. The staff were more interested in chatting to some old guy that wouldn't go back to his seat for ages. They also decided to sell competition cards and drinks/snacks before eventually getting round to the in flight meals.

Apart from the passenger in front of me putting her seat back so far that I could barely move, the rest of the flight was ok. Food made me less dizzy and nauseous. When the plane landed, special assistance passengers had to wait for other passengers to leave the plane. Instead of a tunnel that we could all use, steps were taken up to the plane's front door, so we had to wait for the ambulift again.

Unfortunately some of the airport staff had blocked the way to the front door with equipment, so the ambulift could only be attached to the back of the plane. Most of the passengers needing special assistance were seated near the front of the plane however. We had to walk right to the back of the (large!) plane. Mum's foot was very swollen and painful, so the staff thankfully used an aisle wheelchair to get her into the ambulift.

The special assistance staff at Birmingham Airport were varied in their competency and attitude. One staff member (young lad) was as helpful as he could be, but was inexperienced. The other staff member (older woman) was rude and impatient. The female special assistance staff member tried to hurry us out of the ambulift. She hadn't brought wheelchairs for Dad and I, and seemed suspicious when we said we needed them. Luckily there were vacant ones nearby.

A few things happened which annoyed me. When being suspicious about Dad and I needing wheelchairs, she said "Really? All 3 of you need wheelchairs? How on earth do you manage on holiday?" She also barked at mum "brakes. now." before wheeling her into the airport.

After about an hour after the plane initially landed, we eventually got through the airport, through passport control and to the baggage carousels. The female member of staff spoke over us rather than to us for most of the time.

When we arrived at the baggage carousel, instead of checking we were ok to walk from there, the female member of staff said to the young male member of staff "I'll leave them here, they'll be fine" They then walked off. Luckily the young member of staff saw we were struggling to get the suitcases onto the trolley. He came back & was brilliant. He helped us with the suitcases, pushed mum in her wheelchair right to the taxi stop; checking that I was ok to walk there and that dad was managing ok with the trolley. Even though he seemed nervous and inexperienced, he helped us MUCH more than the rude female member of staff.

We were very late for the taxi (and got a lecture from the taxi driver) but at least we were going home!

So that was my most recent experiences with Airport Assistance! I have complained to Birmingham Airport and Thomas Cook; using their complaint forms. I'm not sure what to expect from their responses, but I hope they respond quickly and speak to the staff concerned. Clearly more training is needed.

Have you used Airport Assistance? Which airports? Comment below with your experiences!


Wednesday, 22 August 2018

Mental Illness and Emotional Eating


(Trigger Warning: Detailed discussion of weight, diet, and disordered eating)

Disclaimer: This post is in no way designed to promote dieting, disordered eating etc. This is purely an account of my own experiences with emotional eating and my perceptions of my own body.

Emotional Eating: "The practice of consuming large quantities of food - usually "comfort" or "junk" foods in response to feelings instead of hunger." (source: https://www.medicinenet.com/script/main/art.asp?articlekey=46450)

I am most definitely an emotional eater.

The mental health problems I have do cause a lot of complicated and negative feelings. I spend most days looking for distractions and comfort. I'm lucky in that food is readily available, I can use online apps to order takeaway, and my local supermarket is within walking distance. Unfortunately, this also means I can quite impulsively buy food, especially when feeling low or stressed.

Despite this, I'm actually trying to lose weight. (I am very body positive of course, but personally I don't feel comfortable with my own body). I'm trying to find other distractions or non-edible "treats" in response to my emotions, but this is very difficult.

Although the weight loss program I'm on helps me to eat in a healthier way, it also means that I am constantly thinking about food. The mindset I seem to have at the moment (which, according to my consultant, will most likely change) is that food is something to use as a way to treat myself when I've achieved something, console myself with if I feel down or frustrated, and occasionally even punish myself with if I feel like a failure.

Most of the time, especially since trying to lose weight however, I feel guilty after comfort eating. I worry so much about the potential "consequences" (i.e. putting on weight) and sometimes that only results in more emotional eating. It becomes a vicious cycle of guilt, emotional eating, more guilt, more emotional eating, and so on. It's not easy to break out of this cycle, but usually the guilt gets so severe that I stop.

This weight loss program is starting to help me think about food in a different way (e.g. to enjoy in moderation, experiment with, learn more about etc) and I think I can manage my emotional eating myself, but I know it is going to take a while.

In the meantime, I'm going to focus on other distractions (I recently took up cross-stitch again!) and addressing the feelings I have. I will still treat myself, but I will try to be mindful of the signs that this is becoming emotional eating.

I also want to address the guilt I feel when eating foods considered unhealthy. Words such as "naughty" and "junk food" are really unhelpful. Food is not something to feel ashamed of eating. It's a difficult thing to balance; body positivity and attempting to lose weight, but I'm trying.





Tuesday, 14 August 2018

A Day in the Life of a Chronically Ill Person: Flowchart Edition

I've been wanting to do a "day in the life" type blog post for a while now, but I wondered how I would show this. A load of long winded paragraphs didn't seem appropriate, so I had a good think about what I do in my day, and broke it down into steps. Because my days are filled with decisions, based on how severe my symptoms are at that particular moment, I decided a flow chart would be the best way to present this. Apologies for the imperfections, this was done on OpenOffice Writer, screenshot and pasted to Paint, then uploaded as pictures here. 










I hope this explains a typical day in the life of a chronically ill person well. How do you manage your days? What types of decisions do you have to make? Please comment below.

Wednesday, 1 August 2018

Am I Ready?

(TW: Mentions of Self Harm and Overdosing)

Recently I've been thinking about where I'm going in life. There's a lot I want to do, but my health either won't allow it, or causes me to struggle to do it. If this is the first post you've read by me then here are my diagnoses:

Fibromyalgia
Joint Hypermobility Syndrome
Overactive Bladder Syndrome
Irritable Bowel Syndrome
Borderline Personality Disorder
Obsessive Compulsive Disorder (although I'd say this is very mild these days)
Depression
Generalised Anxiety Disorder
Agoraphobia

Some of these illnesses aren't as bad nowadays, but others can be unpredictable. After trying different medication, I've come to accept that this is probably the best my health will be for the foreseeable future. So, what do I do with my life?

I've always been an ambitious person, and I do put a lot of pressure on myself to achieve things. This means I tend to do too much at once, or throw myself into things without considering pacing myself. I want more out of life than I'm getting right now though.

I've considered studying again, but doing it with the Open University so I don't need to travel. I looked into a Masters in Psychology. I meet the entry requirements, and I could get the finance I need, but the only thing I can't do is afford the £2000ish required upfront before the loans are paid in. I want to save up for this somehow, but I don't see how I can save much at all while on benefits (they do not stretch far!)

I've considered working again. It should mean more income, and I could hopefully keep my PIP (if the assessment goes well, as I'd have to report a change in circumstances). Could I manage working though? Even the most basic-sounding office job requires sitting up for hours on end (I often have to lie down), remembering a lot of information, possibly walking to different departments, answering/making telephone calls (I'm not as bad now, but still have phone anxiety), bending and reaching shelves (which I can do, but it's very painful) etc. Even part time, I'd be doing this about 5 days a week. Is it worth compromising my health? How many times would I have bad days, and need to call in sick? What about the days when my anxiety disorders give me panic attacks, my depression causes me to need naps throughout the day, or my BPD causes me to feel such self hatred that all I want to do is harm myself? It's a constant battle, and with the (lack of) support I have available for both physical and mental illnesses, I don't see much changing. The more realistic option would be a home based job, but there's not a lot around that offer regular work that would pay enough for me to live on.

I want to move out before I turn 30 (I'm 28 right now), but I don't know how I will manage on my own. Last time I planned moving out, the stress put me into crisis, I overdosed twice, and even now I still have urges. There's also finances to consider, how I would physically cope with running a house by myself, and how my benefits would be affected because of me having to cope by myself. I can't live with my parents forever though.

I went to a family wedding very recently, and one of the usual questions came up from a certain family member; "so, what are you doing these days?". I mentioned that I blog and I vlog sometimes, but of course what they wanted to know was if I was working yet. The disappointment in their eyes when I said "no" was quite hurtful. I quickly followed this up by explaining I'd been thinking about studying or working. They didn't seem satisfied though. Apparently Psychology isn't the right path to go down for work or study. I should be doing Computer Science instead.

As well as working *and* studying, they expected me to take up driving lessons again (I did learn 10 years ago, but failed my test and couldn't afford it/lost my confidence afterwards). They also wanted me to travel to see them more.

It was very hard to explain why I couldn't do some, let alone all of these things. I also felt I wasn't being listened to, I was just being told what I *should* be doing. The thing is, this family member knows at least some of the illnesses I have, yet they don't seem to realise that chronic means lifelong, and that these illnesses affect my daily life significantly.

This has been playing on my mind a lot recently, and I feel like I'm achieving nothing in my life right now. I spoke to a few friends about how I'd been feeling and got some great advice for testing how I'd manage with the workload of a job, as well as some advice about driving. To my surprise, a lot of people my age and older don't/can't drive. The only reason I might take up driving again is if I have children in the future. Apparently, I may have to check with DVLA as to whether (with my conditions) I'm actually allowed to. Honestly, I don't want to drive. It makes me panic, I don't feel safe or in control, and I don't think it's worth feeling this way. I always felt like I had to learn though, for my family if not myself. To be told by a friend that I don't ever have to drive if I don't want to, was really helpful though.

Right now, I can't say I've decided on anything. I'm looking at job vacancies, but I'm also considering whether I'm ready or not. Studying will have to wait, unless I do some free short courses. Driving is something I don't want to think about right now, and I guess moving out will just have to wait until I'm financially more secure (whenever that will be).

In the meantime, I have to look at the little achievements, one of which will be finishing this blog post!

Do you have a Chronic illness (physical and/or mental) and struggle to work/can't work? What parts of your job do you struggle most with? What are your thoughts?


Tuesday, 17 July 2018

Discharge, again

So, I've been discharged from CMHT again. I'm not sure if I feel ready, but the way my CPN spoke, I get the feeling that they just don't have the resources to do anything else for me. There was the option of a Distress Tolerance group, but my Support Worker had already covered most of it, so my CPN didn't think I'd get any more benefit from it.

I'm not left completely empty handed however. I will get a care plan in the post (so at least I'll have an idea as to what to do if feeling unwell) and I've been signposted to the Cruse Bereavement Counselling service (for the abortion) and a domestic violence charity (for my abusive relationship, see I'm a Survivor)

I still feel weird, and lonely, and lost, but I don't think I'm quite as unwell as I was when referred to CMHT. I'm writing this on a day where I feel numb though, so who knows!

When having a personality disorder that mainly manifests as extreme mood swings, I find it really hard to tell whether I'm getting more ill or if I'm having a bad hour/day/week. My moods often change so quickly, I can be feeling extremely low at one point, agitated and paranoid the next, and hyper the next. This means that I can appear fine when I'm not. I can appear happy in an appointment, and then can feel very unwell when I get home.

Going back to the subject of signposting, I'm currently building up the courage to ring these places to see what sort of help I can get. I have some events coming up quite soon, and bringing myself back to these traumatic times may be risky, so maybe I should wait until at least some of these events have passed? It may be that there's a waiting list for help though, so do I get the ball rolling now?

How have you felt after discharge? Did you feel it was too soon, or did it turn out to be the right thing for you? Please comment below.

Sunday, 8 July 2018

I'm a Survivor

(TW: gaslighting, ableism, physical assault, sexual assault)

For a while, I've been thinking about writing a blog post about an abusive relationship I was in years ago. I did write on an anonymous blog a while back, but I'm finally feeling like I shouldn't need to hide what happened to me. It was not my fault.

When I first got ill, I was at university and I had already been dating someone for a month or so. Let's call him "A". He seemed lovely. "A real gentleman" I used to say. We both thought that my illness was a short term one, and it was him who encouraged me to go to the doctor. He was very supportive, and seemed to share the same frustrations as me, when the doctor fobbed me off. As the months went on, and I got worse instead of better, the support died down. I was still undiagnosed, and had started to miss lectures, cancel dates last minute, go out of the house less. I was in pain, exhausted, extremely nauseous, and very dizzy. I pushed myself as much as I could, but I couldn't deny that I wasn't able to do as much. One particular date was to a very nice & expensive restaurant, and I had to cancel 20 minutes beforehand. Instead of being understanding, A seemed very annoyed, as if I'd done this on purpose. He often made me feel like this, and I hated it.

When I had to miss more lectures, A started making nasty comments to me (even in front of my friends). He would tell me I should stop "skiving" and that if I carried on, I would fail my degree. The longer I was ill, the less he would believe I was ill. I think in his eyes, you take pills and get better quickly. And that if I didn't have a diagnosis, I wasn't *really* ill.

I found he was quite hypocritical too. He expected me to come to him; as opposed to him coming to me. He wouldn't make any allowances, and everything appeared to be on his terms. I could've really done with some help, but he offered none. I didn't see any point in asking. One time, he was ill with the flu. It was a day when we were supposed to go to a BBQ with some friends. He rang me up on the day, and asked me to go to the shop and pick up some supplies for him (pain meds, soup etc). I struggled to get there, but did it anyway. I would go to the BBQ afterwards. I heated up his soup for him, got him a drink, made sure he had everything he needed and could rest. He really didn't look well, and appeared to want some space after he'd eaten. I checked he had everything he needed, then said my goodbyes and went on my way. Everything seemed fine.

In later arguments (usually about my illness) he would bring up this day as a sort of "dig" at me. He would say that I barely did a thing for him "all you did was heat up some soup!" and that I was in a hurry to get away from him, and go to the BBQ to see my friends.

Similar arguments followed; involving him belittling anything I did, twisting my words, denying things that had happened, making everything seem my fault, telling me that the friends I'd made through him, were *his* friends, not mine.

When it came to sex, A had quite a few expectations. He was a virgin at the time and believed that, because I was more experienced than him, and because I loved him, I had to prove this by doing whatever sexual things he wanted. I was very reluctant to do some things, due to finding them physically uncomfortable or because of bad experiences. He didn't seem to care, and I was often coerced or tricked into doing things or allowing him to do things. I won't go into detail, but basically he sexually abused me. I didn't know it was sexual abuse at the time though, and his gaslighting made me doubt the validity of my experiences. Now I know better, and can finally say I am a survivor of a psychologically and sexually abusive relationship.

Eventually we broke up. For a little while, he wouldn't leave me alone though. I remember a time when he wanted to meet after a lecture to "talk". He was very persistent, so I reluctantly agreed. We went on a walk, and the usual arguments resumed. A friend of his came up to say hello, and they started chatting. I can't remember exactly what was said, but I said something (friendly, nothing argumentative etc!) and A snapped at me to "shut up". The friend left soon after that (understandably) and we carried on walking. It seemed he wanted to get back together (god knows why), and wouldn't accept that I didn't want to (he didn't like taking "no" for an answer). I told him I was going home, and that the conversation was over. He got very annoyed and started to follow me. I kept telling him to leave me alone, but he grabbed my arms and kept trying to get me to listen to him. The way he was acting honestly scared me. He didn't let go until a friend of mine happened to pass on her way to a lecture, and saw us. I was very panicky and tearful after that, so walked with my friend and somehow got through the lecture.

I made the mistake of speaking up on social media; which resulted in people calling me "crazy", "psycho", "bitch". I felt I couldn't speak up after that.

I am speaking up now though. He has no control over me anymore.

I'm a survivor.

Monday, 2 July 2018

Please Help My Friend Fund Her Care

Recently, a close friend of mine found out that, due to funding cuts, she will lose her care unless she can fund it herself. She is on a small and very limited income from social security and can only just about fund her daily living costs. She does not have the money to fund her care as well, but she simply cannot afford to lose it. Without this vital care, she would lose so much quality of life; her independence especially.

We decided to set up a gofundme fundraising page to see if we could get enough donations to raise the money for her care. There has been a few shares, but only one donation so far.

I'm asking for your help. Can you please share far and wide, and donate if possible? This is so important, and would help her so much. She deserves to have as much independence and quality of life as possible. It is not easy, asking for money, but unfortunately this is the only option she has. I have posted the link below, so please have a look, share, and donate. Any amount makes a big difference and we will be so grateful! Also, advice is very welcome if you have set up a fundraiser before. Any effective ways of signal boosting? Effective ways of wording the campaign? Details we need to add? Any advice helps.

Thank you in advance.


Wednesday, 27 June 2018

Emotion Regulation Therapy: Session Six, Last Session

(TW: Overdose, mentions of self harm, abortion)

Since my previous Emotion Regulation session, my mood had been worsening. Thoughts and feelings were building up rapidly, and there were feelings I found hard to understand. One of them was this heartbroken feeling. I hadn't broken up with anyone recently and I'd not suffered loss for a little while, so I couldn't understand where it came from.

I was also having dangerous urges to self harm and overdose. My thoughts were racing and needed some sort of release. I wanted to shut out my emotions as well. A few days before my last therapy session, I took an overdose. Although small, it was more of an overdose than the last couple of times. Again, I wanted to be unconscious. I didn't want to think or feel, because it was too painful and confusing.

By the time this session came round, I was feeling desperate for more support. I wasn't happy that this was the last session, and I felt I needed more support (although I wasn't sure what support I needed). I also wasn't happy about the fact that my appointment with my CPN (whenever that will be!) will probably result in my being discharged. I felt as bad (if not worse) as I did when I was referred to secondary services, and felt guilty for not improving more through therapy. I had learnt new skills to tune into emotions, self soothing, and how to lessen/delay urges, but I found them very difficult to put into practice.

I spoke about this to my support worker, during my therapy appointment. She was disappointed and worried that I'd taken another overdose. Although she knew that I wasn't exactly suicidal at that time, she did tell me that I could end up killing myself if I keep on like this. She said this unhealthy coping mechanism was in danger of becoming a habit. I admitted it was starting to become that. As for support, she told me that there wasn't a lot the CMHT could do. They could advise me to not overdose, but they didn't have the resources to stop me, especially as I have "insight and capacity".

As for therapy, they could only offer short term sessions. What she did say was that there are some group sessions for Distress Tolerance happening next month possibly. She will have a word with my CPN, to see if I could go to those before being discharged.

We then spoke about the feelings I had noticed recently; primarily the "heartbroken" feeling. I told her I couldn't understand why I felt this way, and what had led to it. What she responded with, really clicked with me though. When we have an unexplained feeling, that we cannot understand in terms of where it came from, it's likely that it is an old feeling resurfacing. She gently suggested that it may be due to the abortion I had nearly 10 years ago. Suddenly, it made a lot of sense. Things such as the Ireland vote had triggered my thoughts and feelings about this. I'd tried to avoid this, but it has been all over the place recently. I knew it affected me a lot, but I guess I didn't expect the feeling to last weeks.

(I'm now dissociating as I write this. It is one of my only ways to cope with speaking about it)

I started to shake and cry as I told her I agreed with her suggestion. I had many complicated feelings about this time in my life, and apart from an amazing friend who was with me throughout, I did not get much support. The man who would've been the father was really upset that I had decided to have the abortion. I know that he'd always wanted children. He never asked me how it went, how I felt, if I was ok etc. He lit a candle to honour the baby that wasn't to be.

My new boyfriend at the time appeared to be sort of supportive, as I had times of constant crying, numbness, and silence, but in arguments afterwards, he told me he was angry that no one had considered how he felt. He also said something disgusting about babies, which really upset me.

When it happened, the nurses treated me as if I was a bad person and an irresponsible child. I was offered no counselling (even though I was clearly distressed) and the only appointment I had afterwards was a nurse's one to put me on the contraceptive pill.

I told my support worker most of this, and also that I worried in case it was my last chance to have children. She said what I needed to do was problem solve. My main worry was about fertility, so a check up with a doctor would be the first step. The next thing would be to get bereavement counselling, so I am able to cope with this and gently expose myself to situations where the topic of abortion arises. She also said it may be helpful to connect with others who have been in similar situations. This type of thing triggers me badly though, so I'm going to need support through it.

We then moved onto the last worksheets. feeling our emotions. It involved staying with uncomfortable feelings, and practise doing this until it becomes easier to cope with. The worksheet spoke about Emotional Mindfulness as a way of feeling emotions without judgment. There were 6 steps to this: acceptance, paying attention, slowing down, giving way, seeing it through, and reflecting.

Acceptance involved understanding that feelings come and go, and we cannot control this. We have to accept them without judgment instead of fighting them.

Paying attention reminded us that feelings are felt in the body. We should pay attention to those bodily feelings and try to link them to certain emotions to see if they fit. We also need to stay in the present, and not try to figure out why we feel this way

Slowing down by focusing on each feeling that arises, and sitting with it as well as observing it closely.

Giving way when the feelings arise. Letting yourself cry or feel angry for instance. You don't have to do anything apart from let go.

Seeing it through by considering the positives that come from feelings. According to the worksheet fear brings wisdom, sadness brings healing, and so on. We should be able to feel our emotions through to completion, and feel lighter once they subside. If we are "stuck" in one feeling, and can't ride it completely, there may be reasons for this. These feelings could be defensive (feeling angry when actually upset etc) and there may be more going on. Another reason, as I explained above, may be that our feelings have roots that go back to a previous time. These feelings are not resolved, so linger and resurface.

Finally reflecting. It is important to reflect on our experience and understand how important it was to feel our emotions through to completion. It is not an easy thing to do, and takes courage.

The session soon came to an end after this. I was still very tearful, but also emotionally exhausted. My support worker told me to look through the worksheets and practise the tasks on them. Also, she said to not put too much pressure on myself. This takes time and isn't easy. I must not blame myself if I can't do this sometimes. She also urged me to not self harm or overdose again. Lastly, she reminded me that she would be suggesting to the CPN that I am not discharged yet, and that I may benefit from the Distress Tolerance group.

Tuesday, 26 June 2018

Emotion Regulation Therapy: Session Five

By the time session five had come round, I'd had a lot of different thoughts and feelings. I was supposed to try and tune in to my true feelings, and among feelings of agitation, irritability etc, I'd been very low. Instead of staying with those feelings though, I'd been doing anything I could do distract myself. I also avoided letting myself cry, especially in front of other people. I worried about how I'd react if I really did let myself sit with all these feelings. To me, it was a big risk to take.

I've been reading through the book these sessions have been based around i.e. "Living Like You Mean It" and found that I really do fear my feelings. I'm uncomfortable when I feel happy, I turn away from people when I feel low, I isolate myself and turn my anger on myself and so on. I don't try to "ride the wave" of emotions.


My support worker said that emotions were like waves; they peak, then dissipate. Because I constantly distract myself from my feelings, all I can imagine is the peak, not the dissipation, so it seems as if the feeling won't go away.


My homework from last week was about noticing that I am having feelings, try to tune in to what they were, and to notice how I react to them. There were some suggestions for the kind of ways we avoid showing our emotions e.g. physically turning away from someone when upset, being dismissive of your own feelings etc. I could relate to a lot of things and started to notice when I did them. 


The worksheet called this "Becoming aware of your defences" and categorised ways we avoided/showing feelings into Interpersonal defences, and Intrapersonal defences. 


Prior to this session, I'd found out the decision about my medication review. The nurse prescriber had decided nothing else would help my depressive feelings or mood swings, so I was to stay on the same medications and same doses. I was disappointed about this, and found it hard to accept. I noticed that this had been a main factor in my low, hopeless feelings. It felt as if nothing was going to get better, and that I wasn't trying hard enough in therapy. The nurse had said that therapy would be my best bet, but I honestly thought that I should've progressed more noticeably by now.


I told my support worker this, and together we summarised my thoughts and feelings, as well as deciding which were thoughts and which were feelings. The trick was to see if a sentence I made started with "I feel like" or "I feel that". If that was the case then I would try to replace "feel" with "think". If it still made sense then I was expressing a thought not a feeling. What we then realised was that I thought the situation (no new meds, not much improvement) was hopeless and I thought that my future was bleak. What I actually felt was low, disappointed, and tearful. 


Back to the worksheet. The next part spoke about how feelings themselves can be defensive. e.g. someone could respond to something with anger when they actually feel hurt or sad. We know a feeling is defensive if it does not go away and we ruminate over it. We have to try and find out what else is going on for us. What are our core feelings? Only then can we tune into them, "ride the wave" and eventually feel some kind of relief. 


My homework for my last session was to read through the worksheet again, and use the tools on there to tune into feelings, see which were thoughts instead of feelings, and learn how to deal with coping with what I find. This involved being gentle with myself, not putting too much pressure on myself, and using breathing exercises to slow myself down.


After this session, I recorded a vlog to talk more about the book "Living Like You Mean It". The link is below, if you'd like to hear more.


https://www.youtube.com/watch?v=7IjuBWkzI1I&t=8s&list=PLLVKOK6LyfuspXXsZ0xdiKCW_Z6SYjTzO&index=21


Thank you for reading (and watching my video, if you did!). My next post will be about my last session of Emotion Regulation and how I've been feeling since.





Tuesday, 5 June 2018

Emotion Regulation Therapy: Session Four

(See Session Three to catch up)

At the start of the session, my Support Worker told me about her discussion with the Nurse Prescriber re: my psychiatric medication. Apparently, because I'd said I didn't want to go on the Mirtazapine (because of the weight gain risks), she'd decided I was to stay on Sertraline and she had cancelled the follow up appointment. I was quite shocked about this, especially as the nurse hadn't phoned me to say anything about this. I obviously wasn't happy about her decision, so my Support Worker said she'd have another word, to see if they could put me on something else and rebook the follow up appointment. I'm still waiting to hear back about this.

I was feeling quite numb on the day of my therapy appointment. I struggled a bit with concentrating too. I did ask whether this was my last appointment as well, as I was worried that I hadn't improved enough to be discharged. Thankfully, she said that although this was the last booked session, she and my CPN had a discussion and decided I needed another two sessions before considering discharge. I was really relieved about this. I told her that my moods had been all over the place again, and although I was coping today, I don't know how I'd be the next day and didn't want to be discharged, only to be in need of referral straight after.

She seemed a bit concerned about my mood swings, and wrote some notes down. One thing she did mention, that has been getting my mind going a lot, was that even though I seemed quite low in session three, overall she hasn't noticed Depression in me on the whole. I wasn't sure what to say to that. The first mental health diagnosis I was given was Depression, and that diagnosis has followed me for years. I'm not actively suicidal anymore though, and my low points aren't quite as low as they used to be. I do self harm more than I used to though. I've found a change in the symptoms I have too. After the appointment, I did look into Depression with BPD and an article did talk about how depressive symptoms tend to be different. Of course not everyone with BPD will experience exactly the same, but the article said that the symptoms are more to do with anger, loneliness, guilt/shame, and boredom, whereas with Depression alone, the symptoms are more to do with sadness (understatement I know), feeling like a failure, lack of energy etc. I definitely felt I could relate more to the BPD depression than the standalone Depression diagnosis. It could be that the article is inaccurate but I could relate to what it said.

Anyway, back to the session. The topics we spoke about were more of a follow on from session three. We went through parts of the "Living Like You Mean It" book, and some more worksheets too.

The first worksheet was entitled "Life is Like a Wheel". It explains that life is always changing but eventually goes back round to the first point of the wheel. This is usually because of things happening in your life. For example, you could feel happy or successful at stage 1, a traffic jam could make you very stressed at phase 2, a bad comment from your boss could make you feel worry and suffering at phase 3, a compliment from a colleague could make you feel hopeful at phase 4, then back to happy at phase 1. It says that feelings are temporary and that they can change from hour to hour even.
It also states that certain feelings can take longer to change. For example, grief. A loved one dying can make us feel a huge sense of loss. Sadness and sometimes anger may follow. Anxiety may occur; worrying how to cope without our loved one. Denial may come next; where we may try to hide our feelings and block out memories of the person who has died, eventually allowing the tears and sadness to come, remembering the person in good and bad times, visiting their grave etc will start the healing process, then hope and happiness should follow. This can take years but the grieving process will be completed.

The next worksheet was entitled "The Assertive Option". It gave examples of certain feelings. On the right hand side would be unhelpful things we often feel or do, on the left hand side are better, more assertive behaviours, feelings etc. For example, acceptance rather than denial, and sharing feelings rather than hiding feelings.

The last worksheet (quite a wordy one!) explained acceptance. It defined it in 3 parts. Firstly, to accept something is to acknowledge it exists, secondly to believe there is no reality that should not exist, and thirdly, to see it as bearable.

The worksheet gave examples of accepting certain realities, e.g. that there are no certainties in life, utopia doesn't exist, and we cannot change others. It also explained that accepting something does not mean you have to like or be indifferent to it, and that acceptance is vital for stress management.

I find this very difficult, although I acknowledge it's important to accept things. I have strong views about being compassionate, equal rights etc and I do find it hard to accept when I come across people who believe certain people don't deserve the basic things in life for survival (food, shelter etc) just because they don't work for example. I guess I find it hard to believe someone could be that callous, and I want to have enough courage to debate their opinion and get them to see my point of view. I cannot change anyone and I cannot control the opinions they have. I can educate and maybe even persuade, but I can't completely change them. So I have to try and accept this reality, no matter how much I may dislike it.

In order to accept realities, the worksheet says we need to be mindful of our thoughts and beliefs about other's opinions. These can include believing someone should be different to who they are, the need to make them admit they are wrong, and the feeling of anger at being unable to do anything.

It also includes challenging our demands by asking certain questions of ourselves. "Can I really change this person/situation?", "Why must this situation etc not happen?" for example.

Lastly, the worksheet asks us to practise acceptance in order to improve stress management.

My homework is to do read through the worksheets again and practise acceptance. I think this will be the most difficult task so far, but maybe it'll help my stress levels?


Tuesday, 29 May 2018

Emotion Regulation Therapy: Session Three

(TW: Discussion of weight, medication, self harm, and suicidal ideations)

My third Emotion Regulation Therapy session was the day after my medication review. Because of this, a lot of how I was feeling related to it. I was also feeling very low, and therefore was putting a very negative spin on things.

We started off by discussing my medication review. My Support Worker wanted to know how it had gone, how I felt about the Nurse Prescriber's decisions etc. I wasn't sure what to think of it really. I think it went well, in that I was listened to, my antidepressant would be changed, and I would be seen again in 6 weeks. The antidepressant I may be put on though, is Mirtazapine. I was ok with that at first. A few of my friends take it and find it very helpful. Unfortunately, one of the most common side effects is weight gain. I'm trying very hard to lose weight at the moment, I struggle with comfort eating, and I'm honestly terrified of putting more weight on. I don't feel any benefits of Mirtazapine would be worth it, as the potential weight gain would worsen my depressive symptoms enough to cancel that out. I told my Support Worker this, and she said that when she'd been told by the nurse about the medication, alarm bells rung for her because she knows I'm trying to lose weight. She then told me that she would get the Nurse Prescriber to talk to the Consultant Psychiatrist (who is in charge of deciding the psychiatric medication I should be on) to see if he will consider prescribing something else. I've no idea what exactly will be considered, but I'm a bit more reassured that it'll be something that won't/is less likely to cause weight gain.

We then moved onto how I'd been feeling, besides the medication changes. I said that I'd been numb the day before, and was worried I came across as if nothing was wrong with me. I told my Support Worker that I'd overexplained this to the Nurse Prescriber and was worried about how I'd come across. Apparently, I'd explained myself well though, phew! I'd gone from numb to very depressed this day though. I felt like a failure, like nothing would work out ok, and honestly I felt lonely. It's been a while since I've been in a real loving relationship, and I missed it so much. I didn't feel very lovable anyway, and was nervous about trying to meet anyone new. I started crying a lot when I spoke about this. I just felt so worthless, as if no one could ever feel I'm worth staying with for the long run. I know I tend to take things personally, and the last person I met couldn't make his mind up about whether he wanted a relationship or not. One minute he'd be talking about meeting me, the next he would decide he'd rather stay in and smoke weed. I didn't know where I was with him, and although I understood he was addicted, I had to put myself first and stop seeing him. This made me feel very worthless as well. To me, it felt like smoking meant more to him than continuing to see me, as if I was worth less than a joint. I know with addictions it's complicated though, and it's not right for me to take it personally. I just hope he is able to get help at some point.

Next, we went onto the worksheet for that session. This was about becoming aware of emotions. It named eight main emotions as anger, sadness, happiness, love, fear, guilt/shame, surprise, and disgust.
The first task was to think about six of these emotions and, for each, try to remember a time I was in a situation where I felt this emotion. These were what I put:

Anger: When a PIP assessor lied on their report; saying I could walk much further than I could

Sadness: Losing a close friend to suicide

Happiness: Getting a good result on my research project at university

Love: When an ex told me he wanted to marry me

Fear: When a huge wasp flew into the classroom at school (I have a phobia of wasps)

Guilt/Shame: When I had to pull out of moving house with a friend, and they took it badly

The next section of the worksheet described each of those six emotions, in terms of their physical manifestations. It also reminded me that "feelings are felt in the body", "thinking distances you from your feelings", and "how you experience your feelings is neither right nor wrong, it just is"

The last task was to be mindful of my feelings; using the worksheet's descriptions to help me identify how I am feeling in that moment. I found this difficult, but one thing I noticed was how often I tend to feel anxious, without a particular cause. I'd always been unsure of my Generalised Anxiety Disorder diagnosis, but maybe it's right?

Just before the end of the session, my Support Worker recommended a book to me, that might help with identifying and managing my emotions. "Living Like You Mean It" by Ronald Frederick. It's a very cheesy title, but apparently it's a useful book. I've ordered it and if I manage to concentrate enough to finish reading it, maybe I'll write a review! (I'm not making any promises though).

For now though, I will be writing about Session 4 of Emotion Regulation Therapy. This is my last session, and I'm not sure if I will have another CPN appointment, so I'm not sure what will happen next. I'll keep you posted though!

Saturday, 26 May 2018

Medication Review

(TW: Discussion of Medication doses and weight gain)

Last Monday, I had my medication review with the CMHT Nurse Prescriber. I was worried about how I'd come across during the appointment, as I was feeling numb and tend to look absolutely fine when I'm like that.

I was quite calm during the appointment, and explained how I'd been feeling, the kinds of mood swings I have, as well as the times when I'm numb. I sort of over-explained how I was feeling too, and told the nurse that I worried I was coming across as if there was nothing wrong with me. She took that into consideration thankfully, and understood the problems that I had.

She asked me what I hoped would come of this appointment, and I said that I wanted the Sertraline to be changed to a different antidepressant (as it doesn't work for me anymore) and my Aripriprazole dose to be raised (as I felt I needed a stronger dose to control my mood swings).

She said that, because I have BPD (Borderline Personality Disorder), my symptoms were mainly linked to the relationships I have, and medication wouldn't help as much as therapy. I worried that she would stop my mental health medication altogether, but luckily she didn't.

The Nurse Prescriber told me that what she thought would be best was to put me on a different antidepressant than Sertraline, in a different category (SSRIs, Tricyclic, SNRIs etc) as a similar one probably wouldn't work. She didn't want to put me on a higher dose of Aripriprazole however, as 10mg was the appropriate maintenance dose for my needs. It is technically an antipsychotic, and as I don't really experience Psychosis, it wouldn't be suitable to raise the dose.

She asked me if there were any antidepressants I wanted to try. I wasn't sure, but she did suggest Mirtazapine. At the time, I knew nothing about it apart from that a few of my friends found it helpful, so I agreed.*

She said she would have a word with the Consultant Psychiatrist and then would write a letter to my GP (CCing me in) with the medication I was to be put on. She also wanted me to see her in 6 weeks, to see if the new medication was helping. After asking if I had any other questions or concerns (I didn't at the time) she ended the session.

*The session went well, but the next day, I looked up Mirtazapine and was shocked to find it was one of the worst antidepressants for weight gain. I am desperately trying to lose weight and putting on weight makes me very depressed, so I was worried about this! I've since had a word with my Support Worker**, who will talk to the Consultant Psychiatrist to see if I can be put on something that doesn't cause (as much) weight gain.

** I will talk about my latest session with the Support Worker in the next blog post.

Wednesday, 23 May 2018

Emotion Regulation Therapy: Session Two

Emotion Regulation Therapy

(See session one to catch up)

I don't think I was very sure how I felt during this session. I found it hard to connect to any emotions, which I sometimes find quite disturbing. Sometimes being numb is a relief (especially after days of really intense mood swings) but other times, I want to feel *something*.

We went through the homework I'd been set; which was to finish the worksheet about pros and cons of acting on impulses, and using distress tolerance skills. In the next sheet, I had to go through the STOP, TIPP etc skills and see which ones I wanted to try, what I'd do specifically, and what I expected the result to be.

I also stuck up the different skills sheets in my room, so I can see them clearly and be reminded whenever I see them. It's still early days, but I did manage to use some of the skills and I hadn't self harmed too much/badly that week.

The next thing we went through was things we do/think when we are avoiding emotions. I don't always realise I avoid emotions (especially negative ones) but I could relate to almost everything on the list on the worksheet. I ticked things such as:


  • Avoiding situations that might be emotional - (I hate crying, so avoid watching sad programmes or listening to sad music)
  • Feeling discomfort or nervousness with sharing a silent moment with someone - (I always feel the need to fill silences, as I find them very awkward. I also feel it's my responsibility to talk)
  • Feeling afraid of being or seeming vulnerable - (I find it very hard to "let go" especially with people I don't know or trust. It takes a while for me to fully open up and then I worry about oversharing)
  • Never allowing yourself to get angry - (I worry so much about hurting people, even if they've hurt me emotionally. I have had some times where I have lashed out at people I love, and it has made me feel like I'm a bad person)
  • Feeling uncomfortable accepting compliments from others - (I never feel like I deserve the compliments, so tend to dismiss them, or say thank you then quickly change the subject)
The second worksheet spoke about emotional and physical things that may happen when feelings are suppressed. These included things such as anxiety, irritability, teeth grinding, angry outbursts, and depression. I could relate to some, including teeth grinding (which I'm aware I'm doing while I type this!)

The next step was to take action. This involved becoming aware of our feelings, finding ways to manage them before they become overwhelming, feeling the emotions through (including physical sensations) and accepting those feelings as they are. The last step was to choose whether to open up or not. Some situations of course aren't suitable for opening up, but other situations call for being open and assertive. This is a difficult thing for me.

Homework - My homework was to read through the steps for accepting and dealing with emotions, and to try to open up. 

Friday, 11 May 2018

Emotion Regulation Therapy: Session One

Trigger Warning: Mentions of Overdose, Self Harm, and Medication

Since my last post, I've had another appointment with my CPN. This appointment mainly consisted of going over what I'd told her at the assessment, how I've been coping since, and what had been decided at the meeting.

My self harm urges haven't been too strong recently, although they have still been there. I decided I felt safe enough to take control of my medication again and so far have not had any more overdoses. I think this is due to the reassurance that I will get some help. I'm holding out for that, so don't have such a strong urge to do things that could potentially severely harm me. I have self harmed, but only very superficially.

I told her this, and that things have continued to be difficult with my Nan's health (her possible Dementia is definitely worsening). I've made up with the friend who fell out with me over me pulling out of moving house. There's a little less pressure from certain things, but I'm still struggling to cope with the pressure that is still there. I've found recently that my moods have been swinging between feeling numb and feeling very low.

She was pleased that I hadn't self harmed as badly, but she was still concerned at how extremely I tend to react to things. She noticed that I spoke very negatively about myself and put a lot of responsibility on my shoulders when I didn't need to/as much. She told me that she'd had the meeting about me now, and what had been decided was that I will have Emotion Regulation Therapy sessions with my old Support Worker, and that I would have a medication review. I'd already received the psychiatrist appointment for the medication review, but my CPN was concerned that it was too long a wait, so we've decided that my appointment would be rearranged for a much sooner time, with a nurse prescriber instead. I'm quite happy with that. It seems that the Sertraline isn't working anymore, and the Aripriprazole dose is too low.


Emotion Regulation Therapy

Earlier this week, I had my first Emotion Regulation Therapy session with my Support Worker. At the start of the session, she explained that this type of therapy takes skills from Dialectical Behavioural Therapy (DBT) that of course focuses on helping to regulate how someone reacts to certain situations, stressors etc.

My support worker told me the CPN had said that I did want DBT, but unfortunately it isn't offered with my local mental health team. She seemed disappointed that there weren't many therapy options offered (with this team) for people with BPD. She told me that unfortunately, the goalposts kept being moved so it was very hard to get onto things such as pathways that may offer suitable support. I told her that I was just glad to get some support and some parts of DBT that were relevant to me.

We went through how I view and react to things, as well as how I treat myself and others. My Support Worker said that what she could tell from me was that I have strong opinions, but due to fear of backlash, arguments, lack of self confidence etc, I find it hard to voice them. I tend to stand up for others and (in her words) "rescue" others but tend to sacrifice my own wellbeing to do this. I agree to be honest. I wouldn't call myself selfless or anything like that, but I do tend to put others before myself and I'd rather help others than help myself.

We then moved onto the worksheets. The first sheet asked me to think of a situation where I reacted in a quite extreme way. I thought of a recent event, which of course involved my fear of losing friends. This was the time that I was looking to move house with a friend of mine, and due to becoming quite unstable, I had to contact my friend and pull out. He took this badly and (after a few days of silent treatment) sent me a long angry text. Although this has now been resolved, at the time, I was very distressed. I panicked, I cried, I dissociated, and I had very strong urges to self harm/overdose. I felt like I was going to lose my friend of 10 years and I felt very guilty. I knew I'd made the right decision for me, but I'm not used to putting myself first (especially if it meant hurting someone else's feelings) so I felt like a terrible person.

Of course, I had to break this right down into what happened (I put something like "friend fell out with me after I couldn't move house with him). I then had to write down how I reacted (I cried, panicked, asked friends for reassurance, had strong urges to self harm) and then what the consequences were. In this instance, nothing bad happened as a result of my reactions. I got the reassurance I needed from friends, and although I still had urges, my friends talked me out of self harming.

The next skill sheets suggested ways of controlling/delaying acting on my urges, ways of distracting myself, noticing my changes in mood, physical sensations etc, and ways of self soothing. I'll explain each worksheet below:

STOP: This sheet mainly focuses on delaying/stopping acting on your impulse. It reminds you that you are in control. It suggests physically taking yourself away from the situation that is causing these urges, noticing how you feel, how others are reacting, and considering the consequences of acting on urges.

TIPP: This sheet suggests ways to calm physical sensations and emotions (such as using ice to cool yourself down if anxiety or anger raises your temperature).

Distraction Skills: This sheet consists of different types of distraction suggestions, such as activities you can do, helping others, keeping your mind busy or having something physical to concentrate on (different textures etc)

Self Soothing Skills: These involve focusing on stimulating the five senses. This includes stroking a pet, looking at photos, listening to music, smelling perfume or eating a nice treat.

We started on the worksheet that asked me to think of pros and cons of acting on my impulses, and of using the distress tolerance skills. With my Support Worker's help, I filled in the pros and cons of acting on impulses. 

Homework - My homework was to finish the previous sheet, as well as a worksheet where I had to say what skills I wanted to try, what I specifically planned to do, and what the outcome was likely to be. After filling in those sheets, I was to stick up the skills sheets in my room, somewhere I can't ignore them.

Overall, I found this session very useful. I'd already tried some skills, but there were other suggestions I hadn't thought of. I am determined to get my homework done and practise these skills. I'll just have to see how I get on!