Health Anxiety

Dear Psychiatrist – July 2018

Earlier this year, I was sent a letter by my psychiatrist stating that it had been 2 years since our last contact and asking me to update him about how I’m doing and whether they can provide any help. I struggled with this. 2 years is a long time, especially when you hadn’t realised it had been that long and trying to put down in words how I’m doing, how I’ve changed in 24 months, has been really difficult and something that actually made me quite anxious. This might surprise many of you because I blog and vlog about it (albeit not very regularly) but those are done on my terms, they’re about topics that are important to me, at a time that suits me, when it feels right. And often, I take months or even years to hone posts and finally share them with the world. I had originally planned to write the letter the same week I had received his but somehow weeks went by and after writing two thirds of it I just drew a blank. Much as I’m always open and honest, I don’t think on a day-to-day basis about how I am. It’s a running joke with my Nana and close friends that I really have to think properly when they ask me how I am because I’m so used to either saying I’m fine or people not even asking. Seeing how I am in black and white, in polarised terms about improvement and deterioration isn’t easy and having to face the fact that I expected to be back at work and well by now, or at least well on my way there, has been really hard. I had no intention of showing this letter to anyone other than my psychiatrist, and Joe, who I got to proof read it and check it was accurate. It was Joe who suggested I should share it here. I’ve been quite reluctant and despite getting him to take it in to my psychiatrist a few days ago, I’ve just had the Word document sat open on my laptop, not quite ready to post and not quite ready to close it and file it away. It’s nearly 1am and for whatever reason, I’ve finally decided to bite the bullet, to listen and trust in Joe’s wisdom and share this here now. In some ways I think it makes me sound worse than I am but Joe thinks the opposite, that depending on what people focus on in my words, it may well give a less accurate picture and sound like I’m better than I am so hopefully you’ll read it just as it is, the good and the bad, without giving one more weight than the other. I often think that I’m so used to this now, so used to being ill, that I can no longer give an accurate picture, no longer compare to “normal”, or life before these conditions because the memory of that is so faded and distant. Hopefully it’ll give you a bit of a picture of how I am now though and another snapshot into my life.

 

Dear Psychiatrist,

Thank you for your recent letter. Sadly, there isn’t a lot to report in terms of progress or improvement. When I wrote to you 2 years ago, I fully expected to be well on my way to recovery by now but that hasn’t been the case. Having now been ill with these conditions for over 4 years, I’m starting to notice patterns of improvement and deterioration though I seem to have little to no control over these. Certain times of year are worse for me due to increased external demands and I struggle greatly when under pressure or when demands are placed on me. Having said that, I’m doing well at maintaining a mostly positive mood and keeping my depression at bay. I do my best to keep busy and keep my mind occupied with productive tasks so I get a sense of achievement and satisfaction. I do a lot of creative activities including baking, crochet and adult colouring. I am also doing what I can to help others suffering from mental illness and run two blogs and more recently a YouTube channel where I am constantly pushing my boundaries in order to create content to raise awareness, increase understanding and decrease stigma. I remain motivated and hopeful of recovery.

I am also a carer for my Grandad who has Alzheimer’s and go as regularly as I can to my grandparents’ house nearby to look after him. Despite them living in their house for my whole life and me visiting on a weekly basis, my anxiety about doing this has not lessened. For periods it seems to ease up and then comes back with a vengeance and I can identify no reasons for either the positive or negative changes. Currently, I’m feeling more capable and confident whilst at their house and am worrying for less time beforehand and it’s not as severe which is a welcome improvement. I don’t know why this has changed and sadly in the past this has always been temporary but I’m enjoying it while it lasts and trying to maintain and improve my abilities as much as possible whilst not getting my hopes up too high that this will last this time. My IBS has been exacerbated by the anxiety and fairly regularly leaves me unable to leave the flat even when I feel mentally capable of doing so. Last January, I bought a new camera and took up photography. This has been a great tool for helping me stay outside and remaining calm for longer because it provides a great focus and distraction and also requires concentration to get good shots. There are times when I can go out for hours taking photographs with Joe or my mum but it doesn’t get easier and has no consistency; almost every time feels like the first time when I’m trying to get out of my front door. I know the research says that practice makes perfect, that systematic desensitisation will work but that really isn’t my experience though I do still persevere and fight as hard as I can to do as much as possible as often as I can.

The focus of my anxiety seems to periodically shift with one aspect easing up while another gets worse so as soon as I seem to learn a strategy to reduce one lot of anxieties, another lot pops up. For the last year, I have struggled less with being outside in people-free areas thanks to doing photography but I’ve become increasingly anxious about health, getting ill and getting food poisoning. My eating habits have changed, I’m much more cautious about what I eat and have a huge fear of being around anyone exhibiting any symptoms of illness, even a cold. It’s exhausting trying to keep up with the constant changes and having to explain these to others while not even understanding them myself.

In terms of help, if there’s anything I can be offered either in my home or remotely then I’d really like to know. I stopped the therapy I was having via Skype over 18 months ago as it really wasn’t helping and I was making no progress so I’m now dealing with this pretty much alone apart from the support from a dwindling number of relatives and friends. I’m doing a very good job of getting through each day, albeit with a huge amount of difficulty and discomfort but I’m not improving, just changing and trying to adapt to each change. My Support Worker still visits occasionally and I really appreciate those visits and very much look forward to them, I really hope they can continue. Although I’m not improving, having a professional to talk to and check in with and also have a link back into psychiatric services when I’m well enough again to attend appointments is really important to me. If you have any suggestions of things I could be doing to help myself improve then I would appreciate them, I am nowhere near well enough to attend group therapy or any kind of appointments, as I mentioned before, I still struggle every time to visit my grandparents at set times and any kind of deadline or time pressure causes me overwhelming anxiety and increased IBS symptoms and attacks, but if there are any self-help tips or resources I should be made aware of then I would really like to know.

Just to make you aware, my GP has now left my surgery and I don’t know who I’m under the care of now, I’ve not met any of the doctors currently practising there. I do not want to be discharged back to their care and wish to remain under yours so that I don’t have to go through the lengthy waiting list process again when I’m eventually well enough to attend appointments and engage with services. I know you’ve not suggested discharging me, I just wanted to make it very clear that my wishes are to remain within your services.

Kind regards,

Lucy

Radio Interview about Anxiety with BBC Radio 5 Live

Today I was woken up by a phonecall that I very nearly didn’t answer because I assumed it was a spam call. Luckily, my curiosity got the better of me and I picked up and was asked if I’d like to interviewed as part of a discussion about anxiety on BBC Radio 5 Live. I always jump at the chance to talk about mental health and raise awareness of these conditions so I agreed and you can hear my interview below. It’s available for 29 days.

Skip to 07.33 for the start of the discussion and 15.01 for my part.

Do let me know what you think!

https://www.bbc.co.uk/programmes/b0b48l2m

Bravery, Pride and Cervical Smear Tests

Lovely readers, I’ll prewarn you now that this post will probably be full of all sorts of things where you think “too much information”, feel free to close and move on and wait for my next post which will probably be less “share-y”. You have been warned!

As many of you know, I’ve been really struggling this year with low confidence and very bad health anxiety that has been increasing week on week. Last week it got so bad and I was getting so many worrying symptoms that I finally looked into getting a smear test done at home as I’m 2 years overdue and have never had one before. A few people thought I’d definitely be able to have it done at home so I thought I’d find out and go from there. I sent Joe off to our doctor’s surgery because I was too scared to phone and ask and probably be told no. I had to wait until today to be contacted and as I expected, they don’t offer smear tests at home. At some point in the future I will write a post about all of the ways in which being housebound/agoraphobic has hindered me, from the mundane things like clothes shopping and getting haircuts to the serious stuff like not getting medical investigations or having dental appointments for 4 years, the list is long and probably surprising to those of you who’ve not experienced these conditions. I had luckily already prepared myself for being told today that I wouldn’t be allowed to have my test at home which would have been extremely difficult for me to cope with anyway but going to the doctors is significantly worse for me. My mum had very kindly offered to come over from the Isle of Wight, a 6 hour round trip, to go with me if I needed her to (I’m sure she must be very glad that I haven’t taken her up on this). I asked the receptionist what other options I had and if there were any quiet periods at the surgery as sitting in a waiting room full of sick people is extremely difficult for me (it’s actually my idea of hell but I didn’t want to sound dramatic on the phone). She wasn’t hugely helpful or understanding; this is probably the same receptionist who gave me completely incorrect information when I finally (after 10 months of psyching myself up) requested a telephone consultation to have my beta-blocker medication dose increased and refused to give me a telephone appointment, informing me those appointments don’t exist anymore. This caused me a huge amount of stress and panic and when I asked what a person with severe anxiety who’s virtually housebound is meant to do, she just reiterated the (incorrect) rules. I was lucky enough to speak to a different receptionist the next day who was absolutely lovely and so sympathetic and understanding and told me that I’d been told the wrong thing about the rules and had worried for 24 hours and barely slept or ate in that time for no reason and that telephone appointments do still exist and my medication increase had been approved. Anyway, the not so nice receptionist gave me a couple of different clinic options, all of which were getting further away from my flat (we don’t drive and my surgery is around the corner), I asked if there were any quiet periods at the surgery and she said no, it’s never quiet – this woman could really do with some teaching about sympathy and bending the truth a little rather than just scaring me silly when I’ve already said that I’m severely agoraphobic and socially anxious. She then mentioned that a cancellation had been made today with their senior nurse and I could be seen at 12.20 with enough time for the appointment to be over and done with before Joe had to go to work. I reluctantly agreed and decided that being anxious about it for the next 3.5 hours was preferable to booking on another day and worrying for significantly longer.

I took my beta-blockers to slow my heart rate down and took some diazepam, reserved for emergency needs like this (I’ve been given a very limited supply that is closely monitored by my doctors so that I don’t end up relying on it or addicted to it). I’m never sure how well the diazepam will work. I almost never take it and so I forget its effects and they seem to come and go in waves and it’s relatively easy for my brain to fight off the effects if I allow it so I do have to kind of give in and relinquish control to the drug and let it work; I did that today and thankfully it worked. On the walk to the doctors I could feel my brain wanting to be anxious, wondering why I was fine when I was in one of my most feared situations but the medication blanketed over that nicely and while I didn’t feel great, I kind of didn’t care about anything and didn’t feel worried. Joe had agreed to come in with me but luckily, while I was waiting I realised I didn’t really need him in there and I’d like to retain some mystery in our relationship for as long as possible that doesn’t involve watching nurses shining a torch on my lady bits, putting things up there and then taking samples out of it. I was seen late but I managed to go in on my own and the nurse was just lovely! She hadn’t been told anything about me which was a bit of a shock but she saw instantly how nervous I was and knew from my notes it was my first test and when I explained about the agoraphobia and why I was 2 years late for the test and about the medication she seemed genuinely impressed that I was even there and just got what a big deal it was for me. This is in stark contrast to much of my previous experience and treatment where I’m often dismissed, disbelieved and treated with aggression for “behaving like a child” and “making a fuss”. I ended up crying, I think with relief, and also because the meds make my brain loopy. She told me everything she’d be doing, explained what all of the different types of results and consequences could be and then chatted to me while I got my kit off and she got the test stuff ready. I really can’t praise her enough. I hate not knowing what’s going on and I’m terrified of pain and it didn’t hurt at all, it wasn’t comfortable but having people sticking things up your lady bits when you’re not in the throes of passion never is but the test itself I barely felt and whenever my breathing was getting fast she got me to slow down and before I knew it it was done! I thanked her multiple times and I hope she knew just how much her treatment of me helped because it honestly couldn’t have gone better, thank goodness for wonder drugs and wonder nurses! She also assured me that unless she wins the lottery, she won’t be leaving anytime soon and so she’ll be around to do my future tests and I’m allowed to request her so that was a huge help. I even got a sticker as I mentioned that that should be a thing given that having a smear test is way more impressive than cleaning your teeth. I think smear stickers should be a thing – “I only cried once on the nurse”, “I looked after my cervix today”, that kind of thing! Mine had a snowflake on which was apt given that it was lightly snowing here today!

So, now I have the two week wait until my results come through. I’m not feeling calm but I am at least calmer than I was. I’m very worried about what to do if the results come back as anything other than my cervix is beautiful and healthy but I’m trying to just deal with that when it comes. Today at least, I’m very focused on how brave I’ve been and how proud I am that I managed to face my fears of doctors, invasive tests, showing people my lady bits, and sitting in a waiting room with sick people. None of those fears will go away, as you know, that’s not how my condition works but at least I fought through them today to get a test done that I needed to have. The nurse even said that I should be really proud of myself and that I’d done brilliantly so that was really nice, I definitely earnt my sticker. For anyone worrying about having their smear test, please try not to, it doesn’t hurt and it’s not even that uncomfortable, at least it wasn’t for me. I have an extremely low pain threshold and often get criticised for fussing too much and making a big deal out of things when they’re painful for me rather than uncomfortable but this honestly wasn’t painful and the nurse was so understanding and going at lunchtime was great because there were hardly any people there in the waiting room. Oh, and diazepam! I wouldn’t have got past my front door without that today and my lovely boyfriend. Get it booked ladies, if I can do it then anyone without a severe anxiety disorder can. Yes, it’s scary but it’s important and you might even get a sticker if you mention it while you’re there!

Before I disappear, I just want to say a huge thanks to my best friend Katie, my superstar online friend Claire and my mum, without whom I’d not have been brave enough to go for this test today. Huge apologies to them too for way oversharing and probably boring them senseless with my ridiculous worries and fears and obsessive thoughts but thanks to all of you, and my lovely boyfriend Joe who went with me to the doctors today, I was able to get tested and hopefully I’m now one step closer to being told I’m fine and that my brain is a massive overthinking hypochondriacal mess (I hope their letters don’t comment on your brain state but you know!).

Health Anxiety - What it's like to live with

Health Anxiety

Health Anxiety – it’s something I mentioned in my last post and boy is it making life almost impossible to live right now. It’s just relentless. And the worst thing? When you’re this anxious for this long, you start getting even more physical symptoms. And what does my brain do with those? Decides I must be ill, poisoned, or dying of something. I literally have no idea what symptoms I’m experiencing are even real now and which ones are either being created by my psyche, my stress response (those ones are real) and which I’m just imagining due to being so sensitive to every single movement, noise or feeling in my body. I can’t even express how all-consuming this is. It’s like nothing else I’ve ever experienced and it’s terrifying.

Every single sensation is now worrying me, am I hungry or is it a stomach tumour? Is my appetite lower than usual? Does that mean I’ve got cancer or is it just that I’m so stressed my appetite has been suppressed? Why can’t I go to the toilet? Am I under-nourished? Sick? Or has my digestion shut down because of my stress response. My heart rate seems a bit high even though I’ve taken my beta-blockers, maybe they’re not working anymore, maybe something else is wrong. Have I eaten the wrong stuff? Is sugar causing it? When did I last eat sugar? It can’t be sugar, I’ve not had any today, maybe it’s adrenaline as I’ve not actually eaten anything yet. My downstairs bits feel funny. I don’t remember that happening before. I don’t remember being able to feel there before. Maybe it’s just a random twinge. Why am I getting repeating random twinges there? Maybe it’s cancer? Would I even know? What if it is? How will I get treatment? I’ve still not had my smear test that was due two years ago because I can’t face going to the doctors, my anxiety just won’t let me. I know I need to go, I know that finding there are changes is so much better than leaving it and them possibly developing into cancer and yet the thought of even trying to make the appointment makes me feel physically sick and my stomach ties itself in knots. I just can’t do it at the moment. I get a pain in my mouth and I’m convinced it must be an abscess, a rotten tooth or that I’ll need a filling. I religiously brush my teeth and realise I’m probably brushing them too hard and causing the pain because I’m so worried about needing dental work. My ears feel weird or I get a slight pain and I’m sure I must be getting an ear infection again. I sneeze or have a slight sore throat and I’m instantly sure I’m getting a cold or flu and that I’ll get really ill with it. Any sort of pain or weird sensation is instantly focussed on, fixated upon and blown out of all proportion. No matter how logical I try to be, no matter how many statistics I bombard myself with to try and make myself see sense, it just doesn’t work. Even when the sensations or symptoms go away, my brain just fixates on the next one. It’s so consuming that I can’t do many activities now because I just can’t focus on them, I’m too busy being convinced that I’m going to get really ill or die. I’m not even scared of dying, if I drop dead tomorrow, I’m kind of ok with that, but I’m absolutely scared senseless of suffering. I’ve felt this way for as long as I can remember. I’ve had a lot of health problems for the latter two thirds of my life, none of them have been serious or life-threatening, but all have involved a lot of aches and pains and never feeling “well”. These conditions have also meant that when I get regular viruses or infections I’m hit much harder by them and get more severely ill and suffer for longer than regular people do. For some reason, I’ve managed to develop a huge fear of suffering that has been increasing for years and made me very frightened to be around other people who are ill firstly because I hate seeing suffering and secondly because of the risk of being infected by them. The only type of illness and suffering I don’t have an issue being around is mental illness which is why I managed to work successfully in mental health and in a hospital no less.

Back to now though. This health anxiety is just crippling. I can’t face going to the doctors to have any of my fears allayed and I often wonder if that would even help because I swear that at the first sign of a new symptom I’d be back at square one again. I’m also so scared that they’d find something that I then have no idea how to cope with treatment for, it hardly even seems worth getting investigated if I then can’t get treated for whatever hideous thing it might be. And I realise just how unlikely it is that there’s anything wrong with me, but still, the worries are constantly there. Today I found out that the most common cancer in women under the age of 33 is cervical. Oh joy! I also know from research that almost all of the female cancers, at least those affecting the lower half of the body, have very few noticeable symptoms and that those I may experience are remarkably similar to IBS symptoms which I also suffer badly from, especially when my anxiety is this bad. I can’t tell you how useful that is when trying to talk yourself down from being convinced you’ve got every disease under the sun. I’m sure that half of the symptoms I’m now experiencing are because I’m focusing so much on my body that I’m getting phantom symptoms from sending too much of my attention to those areas. It’s just doing me in. I’m sick of feeling so on edge, sick of feeling so out of control, sick of feeling like I’m going mad and sick of being convinced that I’m going to die some horrible, slow, painful death. I just want my brain to calm down, chill out and focus on something a bit less morbid than my own death or illness.

Anyone who thinks anxiety is a walk in the park clearly hasn’t visited this particular park which is currently frequented by wolves, big cats, and a whole heap of horrid diseases trying to kill me off at every turn. I have such a strong urge to give up, to stop even trying and to just give in. I don’t even know why I feel like that, I know it wouldn’t help. But I’m so tired. So tired of the thoughts, the constant stream of worries and then symptoms and the desire to research it but knowing that’ll almost certainly make me feel worse. I’m tired of fighting, of dreaming about it, of never being free. I’m tired of all of it. It’s been almost 4 years of fighting with my own head, fighting against each and every new worry that comes up, trying to adapt to every change, to every loss. Having health anxiety and worrying that I might lose even more functioning on top of all of that is nigh on impossible to cope with and means that I spend a lot of each day on the verge of crying because I feel like I’m falling apart. Part of me knows that this will probably pass, or at least ease off, just like a lot of the worries I’ve had throughout this period of illness. But I also know that the anxiety is becoming more and more ingrained and it feels like it’s taking a bigger hold with each passing month. It scares me so much. I don’t want this to become who I am. I have always been determined to be separate from my illnesses, to have them but not to be them. I’m not sure how much longer I’ll be able to say that of the anxiety. It feels so intrinsically linked to who I am now. Most of the time I can differentiate between thoughts from the condition and thoughts of my own but when the thoughts from my condition are so overwhelmingly frequent, so loud and so awful, it’s hard to know where my own thoughts begin because there seem to be so few of them now, there simply isn’t room for anything much other than health anxiety and the occasional worry about going outside.

After my last post I’d hoped to be back to reviewing quite soon. I hoped that expressing how I’d been feeling would help it lessen and in some ways it has, I definitely feel less alone but sadly my health anxiety has just ramped up and up, day after day. My mum came to visit for the weekend and we had a lovely time and I managed to go out with her on two days and take lots of photographs and do lots of walking outside seeing loads of nature and very few people (my idea of perfect!). But still, even while I was out, I was getting twinges, random stabbing pains, wondering if I’d need mum to take me to the hospital. I’m at the point where I’m so frightened that I’m asking people random, really personal questions to find out if what I’m experiencing is normal or likely to be the cause of my premature death. I hate what this is turning me into. My social phobia is ramping up because I know I’m becoming obsessive about this and I’m terrified I’ll bore people or alienate myself from the few people remaining in my life. But I know that I can’t keep this inside as it feels like it’s eating me alive.

I’m not really sure where this post has gone or where it’s ended up. As usual, it feels like a rambling mess and I’m hoping I’ve pulled it miraculously out of the bag and written something at least partially coherent. I’m guessing it’s a heap of negativity and for that I’m sorry but I also can’t even begin to sugarcoat this and I always promised I would never do that, that I’d tell my story, tell the story of so many of us with mental illness, warts and all, with all the worst bits left in. So if this has left you feeling bleak or despondent then I guess that gives you a snapshot into what it’s like to be inside my head, to live a few minutes in my life and I can assure you that it’s infinitely worse when there’s no cause, no end in sight and no tab to close. I hope that sooner than I think, I’ll be feeling a bit brighter, a bit more hopeful and a little less plagued and that I’ll be back with some more positive posts that at least end on a lighter note. I’ll try to edit my photos from the weekend down enough that I won’t bore you all to tears with shot after shot of the same deer or ducks, that’s about the only task I’m managing to do whilst this poorly and I’m still sticking to my showering every day routine. Everything else is pretty much out of reach but I’ll try to get back on with my small tasks project and see if I can achieve a little more than showering and deleting photos. Writing this has been a bit helpful and some of the physical symptoms have eased off a bit which will hopefully sink in to my anxious brain as proof that they’re stress-induced. Huge hugs to all of you who are feeling this way or even just a little bit this way, you’re all warriors to fight this fight every day and I hope it gets easier for us all soon, we damn well deserve it!