BRCA2: The Journey Begins

As many of you will have read, I decided to undergo genetic testing a few weeks ago. We have significant family history of breast cancer on my dads side, and are of Ashkanazi Jewish decent – this is a big risk factor. Due to this combination both dad and his sister were tested for the breast cancer genes, and sadly came back as BRCA2 positive.

The choice to go for testing was not an easy one to make. I did my fair share of burying my head in the sand, but no matter how much I tried, the thoughts would randomly pop into my head. Fear of the unknown, fear of having the faulty gene, fear of my siblings having it, fear of cancer – just lots of different flavoured fear really. I would be in the bath, or driving down the M1, and all of a sudden my mind would flip onto it, and I would find myself going round all of the scariest scenarios possible – namely that I would test positive, and life as I had planned would no longer be an option.

At the just shy of 29, my risks would not have been out of the ordinary – for breast cancer, the risks start climbing at 30, and around 40 for ovarian cancer (at least thats the information I’ve been given).  However, it is more then just the risks to me I was worried about. I have always wanted a family, and although I am free and single at the moment (rather perfecting the art of the crazy dog lady), a positive result would have implications as far as my future children would go. So, knowing full well that I couldn’t put it off forever, now seemed as good a time as any to find out.

After a nail biting few weeks, I went to the genetics clinic to get my result.
Its amazing how much of an effect a few simple words can have on the rest of your life.

I sat down, and the genetic counsellor came strait out with “I’m really sorry to say this, but you’ve tested positive for the gene’.

I don’t really remember a huge amount more from that appointment, other then absolute terror, and a fair amount of water pouring from my eyes. The life I have that is already full to bursting with health problems just got a million times more complicated.

Yesturday I was upset. My gem of a neighbour who had offered to accompany me to my appointment escorted me back to hers for 3 very strong cups of irish tea. We spoke for an hour or so, thrashing around all over the place as my mind furiously sifted through too many scenarios to count. She was extremely patient with me, and allowed me to get my head together in my own time – I honestly don’t know what I’d have done without her being there. I then decided I should keep busy, and as much as I didnt want to, I headed to jewellery class where I could spend a couple of hours hitting things (mostly metal, but my hand is a little worse for where… it turns out my aim leaves a lot to be desired when I’m stressed!)

Today I just feel numb. I know that there are a million and one feelings hidden underneath, but I just can’t seem to find them. The prospect of now needing to consider prophylactic surgery is extremely daunting, and what effects will this have on my already difficult dating scenario? At what point would I drop this one into the conversation. “Hey, by the way not only do I have the body of a 90 year old, but these boobs you see here are for a limited time only, and if you’re up for having children its likely to involve microscopes and something resembling a turkey baster”… Not the ideal selling point.

It will be a process of letting go of the things I had dreamed of doing. A big thing for me has always been that I wanted to breastfeed any kids that I had, but if I choose to go for surgery, this will no longer be an option unless I risk leaving it till I’ve had them.  I had also never fathomed having the one part of my body I’ve never hated being lopped off by a surgeon and replaced with imposters. This will be a grieving process on a very personal level.

Fortunately, I really have stumbled across some amazing people who are supporting me. For all of the friends who have been dropping me little messages to keep my chin up and calling me and allowing me to talk until I find a stopping point without complaint, I can not say thank you enough. There are also 2 rather fantastic charities providing me with access to people who have trodden this path, and this is absolutely invaluable to me. I got a call from one volunteer to ask how my appointment had gone, and her response was exactly right for me – “I’m so sorry to hear that, but welcome to the mutant club!”

So, from one very stripy BRCA2 mutant, I will leave this post here for now. I will keep posting this journey alongside that of EDS and POTS, so I certainly won’t be short of ideas!

The Not So Sexy Side to EDS

Ehlers Danlos Syndrome is a funny beast. Day after day, I am constantly amazed at the weird and weirder things my body decides to do – or not do as the case may be. I would go so far as to say that my collagen is inherently lazy, and no matter how much caffeine I feed it, it just never gets its act together.

Along with all of the usual things that people understand when you say the words ‘faulty connective tissue’, there are the rather embarrassing issues that we all keep rather quiet about. As if pain, chronic join subluxions/dislocations and spectacularly large stretch marks aren’t enough, it seems that all of your insides need to join in the party – and when I say all, I mean all!

So – if you are squeamish about the inward workings of a lady, I would pop off and make a cuppa without reading any further!

Due to everything being stretchy, prolapses of all varieties are all too common. I was aware of prolapses in your digestive tract, but had given little thought to potential Pelvic Organ Prolapse until the last couple of years when something decidedly stopped being where it was supposed to be.

Initially I had noticed issues with discharge of sorts. It was thought to be chronic thrush, but after 6 months of medication, nothing had changed. I had already started having the odd issue with my urinary tract, but after a while, I started to suspect that my discharge was actually leakage from my bladder. I was constantly worried about whether I smelt, and had taken to carrying spare clothing around, as often I would leak just a little too much to get away with staying in the same clothes. I was also experiencing an odd sensation of heaviness/pulling. It wasn’t quite painful, but it was uncomfortable. Upon checking the strings of my coil one day, I found that there was a bulge. After some initial panic, I hopped it off to the doctors and mentioned all of the above.

Unfortunately, that first doctors appointment was bad enough to stop me seeking help for way over a year. He examined me intensely, but proceeded to suggest that the thing I could see and feel was nothing more then my vaginal wall – to which I exclaimed “Well it certainly might me, but it isn’t where I left it”. He proceeded to suggest I probably suffered from an overactive bladder, and gave me medication that in big letter stated “DO NOT TAKE IF YOU HAVE A HEART CONDITION” – obviously totally out of the question for someone with POTS. I came out of that appointment and cried for hours in humiliation. He made me feel like I was visiting for attention, and it made me question myself for months. I really did wonder weather I was subconsciously looking for extra diagnoses and that everything I felt was actually totally fabricated.

Fast forward a year or so, and I was in bed with a guy for the first time since a rather nasty break up years earlier. Just after everything had calmed down, he propped himself up, and explained that I may want to get myself checked as he could feel himself being ‘pushed out’ – hardly the conversation any young woman wants to have with a man. Red faced, I nodded, although the issue didn’t stop there. I had also managed to stab him with my IUD (it seems the weird superpowers were going spare on the day that I was created) – I felt awful! As EDS gives us the power of being super stretchy, even things like the coil are likely to move about. Mine has shifted down over the years, and the combination between a coil sitting too low, and your insides resembling a bouncy castle can wreck havoc on your sex life. Most embarrassingly of all, with the combination of a bladder that is too stretchy (thus retaining far more, and emptying far less then usual) and a prolapse comes the issue of leaking during sex. Again, not exactly a hot date. That night I had to change my bed because of the sheer volume that had literally been knocked out of me – feel free to stop reading this at any time!

After another few months of trying to ignore it (needless to say with a very inactive sex-life), I finally built up the courage to mention it for the second time. I was already under a urogynacologist, and brought it up there thinking I would stand the best chance of getting it taken seriously. She told me I would have an internal examination during one of the tests, and so I agreed to wait until then. Unfortunately this didn’t take place, and so a few days ago, I travelled down to see a member of her team to ask to have it checked. Roll on embarrassing appointment number two.

This second appointment was little better. Initially, the nurse tried to suggest that the man had made it up just to be mean to me. In all honesty, this is so unlikely that he would have deserved a medal for inventiveness if this had of been the case! I didn’t even know much about a prolapse, could you really imagine many men being knowledgeable enough in that area to use as a way of being nasty?! I explained that I could also notice a difference and went into detail explaining my symptoms. She eventually agreed to attempt an internal examination, but persisted in her attempts to dismiss it. She said she could feel a bump, but that lots of women had this and it could be considered normal. She said she could feel it descending upon talking, laughing and coughing, but that she wasn’t really sure what it meant. Eventually she called an on call gynaecologist, so after a 30 minute wait, I was finally able to get it looked at by a specialist. Finally after a 2 year wait I was diagnosed with ‘grade 2 descent with a cystocele’ – essentially this means that my bladder is prolapsing into my vagina.

The gynaecologist told me that there is no reason a normal 28 year old who hasn’t given birth would have this, but that due to my collagen being overly stretchy, it is unfortunately very common in women with EDS. She explained it will either require surgery or a peccary (a device thats inserted to support the vaginal wall), but it would require a more in depth look before anything can be sorted.

So, yet another label added to the list, and this one for me is probably one of the worst. The impact this has had on my confidence, sex life and desires to get into relationships are vast. As if having chronic health conditions weren’t enough, EDS has added yet another source of humiliation, embarrassment and inconvenience to my life. I have no idea how you work your way past this and into a happy and healthy long term relationship when you feel like you need to mark your nether regions with a do not enter sign. It is bad enough that you are in constant pain, with joints that flop about more then a rag doll without it taking away your enjoyment in the bedroom to boot.

A Mini Update, and The Eve Before My Second Genetics Appointment

So as always, a lot seems to happen in a tiny amount of time.

On the medical front, I am happy to report a productive appointment with the very lovely GP yesterday. I feel extremely lucky to have gone from one extreme to the total opposite by chance, and for the first time in my life I actually walk out of an appointment feeling positive.

Having made contact with the endocrine team, they have suggested a referral to them, and a scan of my thyroid as I am now clinically diagnosable as having hyperthyroid (or however you’re meant to phrase that mouthful). So being on the case, this GP was more then happy to sort those referrals out – no hint of annoyance or complacency to be found! Although having thyroid issues are nothing to celebrate, I feel so much relief that they are finally being looked into. Its been over a year of battling – up till now they have been brushed off, and only by TSH and T4 were ever checked (TSH always came back as low, but T4 was normal). Thankfully this GP tagged on a test for my T3 levels, and low and behold they came back as high – hence the hyperthyroid diagnosis. I have been feeling pretty rough since my very long encounter with high dose steroids, and it was around the end of those that my thyroid was checked and found to be not behaving. I am dearly hoping that this is a step in the right direction, and that I can get properly diagnosed, treated and begin to feel much more myself again.

I also spoke to her about my issues with the gastro team discharging me. Apart from spending a lot of time laughing about it (I genuinely believe you could make a comedy script based on my encounters with the NHS), she was pretty unimpressed. She is making contact with my POTS team to ask if they want me referred to any other specific teams (preferably those that are EDS aware), and if not will either try some strategies herself, and/or refer me to a local gastro team. Had this have been the old GP, she would have given me a blank look, scribbled on a peace of paper, told me she couldn’t do anything and written it off as another problem not worth trying to solve. Thank goodness this has happened now and not a few months ago.

We also discussed the rheumatology appointment – I had received a letter questioning why my doctor had asked for them to see me. She assured me it was all written into the first letter, but obviously they hadn’t bothered to read it properly. So she is writing a second time making it clear it is so that I can get a referral to Stanmore – fingers crossed its second time lucky!

In other news, its my second appointment with the genetics team tomorrow, and I am feeling a little bit on edge. I had the first appointment a week and a half ago, and decided I needed time to take in the information before going ahead with the test. It turns out they use the numbers of an 80% lifetime risk of breast cancer, and a 30% risk of ovarian cancer for the BRCA 2 mutation – pretty high numbers for a single gene eh? It will take 4 weeks to get the results once you do the test, and obviously they encourage you to think about both outcomes, and what you would do with a positive result. I am fairly certain that although I don’t want to deal with having the operations and the emotions that they would entail, it would be the most sensible path for me to choose. I don’t want to end up with cancer on top of everything else, and as much as I love my boobs, I am pretty sure I will love them less if I know they stand an 80% chance of giving me something potentially life threatening  (and at least unpleasant). Still, its a rather crazily big decision to make – the choice to know if I carry the gene or not. I didn’t think I would ever need to consider the question, let alone formulate an answer.

So, at 11 o’clock tomorrow morning I will be heading to my appointment, and I think biting the bullet and going through with the test. I would be lying if I said I wasn’t scared.

If you are near Birmingham and fancy a drink and an evening of sarcastic entertainment, then drop me a line – I will need all the distraction I can get!

Another Set Back

Having been relatively surprised with the care I received from my first really caring GP, it should not have come as a surprise that life in the NHS would not stay all that rosy for long. Having said that, it would have been nice to have had slightly longer feeling all warm inside before another blow was dealt.

It took me a year and a half to see a gastroenterologist – I was not all that upset by the waiting time. I know that the NHS is stretched and things are tight – heck, I was just relieved to even be on a waiting list. I got several tests done, and hey presto I have 3 diagnosis to boot (it seems that us EDS’ers really do earn our stripes) – oesophageal and gut dysmotility and a hernia. Nothing particularly surprising really – I struggle with things like dysphagia, regurgitation, the feeling that my oesophagus just won’t push things down (liquids and solids alike), pain and getting full after mouse sized portions (somebody really needs to make my oesophagus stomach sized… design fault me thinks) pretty much every time I eat. Its frustrating on my good days, and makes me want to rip my hair out on my bad days – but I am all good with pretending to look normal whilst holding regurgitated dinner in my mouth before forcing it down for a second go.

The last appointment I had was results day. The guy was nice enough – pretty pushed for time, so gave me a very quick take on things which didnt give my head much time to process. He decided on a treatment plan, and told me he would see me within 3-4 months time, and even had his nurse book me in an appointment there and then, just to be sure. In the mean time, he gave me a list of things to try before we met again – where he would shift things, look into medication etc in order to get things sorted. All fine(ish) – at least we were going to do something and hopefully work on getting my digestive tract back on track.

Imagine my surprise then when I opened an ominous looking envelope a few days ago that simply stated ‘You’re appointment to see Dr X has been cancelled as he has discharged you from the pathway’. After an initial outburst of profanities and tears of sheer panic for an hour, I pulled myself together enough to ring the hospital and ask what on earth has gone on.

The receptionist then proceeded to explain how Dr X had made a ‘typographical error’ and I should never have been offered a follow up appointment. This would have been easier to believe had he not reiterated several times that I would be seeing him again, made his nurse book me an appointment before leaving the hospital and hadn’t sent me a letter following the last appointment detailing out the treatment plan – including the arranged next appointment. I pointed out these little details to the receptionist who promptly told me ‘If you want to discuss this further, you’ll have to go back to your GP as you are now formally discharged’.


So, having calmed down enough to book in another appointment with my GP for Wednesday, I got home yesterday for a second letter of insanity – this one explaining my discharge – surely someone aught to at least post these the right way round? This letter, if it is at all possible, makes even less sense then the former. So much so that I am pretty sure I could have won the award for Best Confused Face of the Year.

Not only does it mention the good old ‘typographical error’ that was ‘greeted with the impression that she will be reviewed again’, it also says: ‘I outlined in the last paragraph my recommendations on the cumulative strategy that cannot improve her symptoms and I therefore do not feel that it is necessary to follow her up’.

Not only does the last paragraph of the letter he is referring to mention nothing about his recommendations on his cumulative strategy (it actually talks about a referral to Stanmore) – but apparently the strategy was a totally pointless (fictitious) exercise anyhow.

Nothing that he wrote made any sense at all – but I am now left essentially having been labeled as untreatable before anybody even attempted to help. I am left still struggling to swallow enough to get in adequate nutrition, still getting worse as time goes on, only now with extra labels attached. I am painfully aware that even if I manage to get a new referral in place, it will take months, if not years to see anybody – and in that time, I am left to deal with this totally alone.

This is not help. This surely qualifies as a form of torture in some countries? I am fighting every single step of the way to get help for conditions that I have actually been diagnosed with. I naively thought that getting the name was the hard part, but with EDS that battle does not stop. For whatever reason, we have to push and push, and fight and fight just to get appointments or treatment. This continuous battle wears you down and leads to you getting sicker and more exhausted – it is a downward spiral into god knows where.

I am sure most issues are funding related, but a little bit of humanity wouldn’t go amiss. These letters made me feel like I was in the wrong. That I had created false memories, or had made up what I wanted him to say. It would be far more respectful to have received correspondence apologising for the change of plan, with maybe even a suggestion of what to do next, rather then just dropping a bomb shell and running. Humanity costs nothing, but can make the difference between leaving a patient distraught and suicidal, or leaving them able to face another fight and push for the care they need.

For me, I have no idea where this leaves me. Having spent 12 years of my life engaged in an eating disorder, oesophageal dysmotility seems a particularly cruel joke from the universe. I am desperate to get it sorted, but I have no where else to turn. I can not afford private health care, and the so called specialist is now out of reach. I am left to wait – for what I am unsure.

I would give anything for a working NHS right now.

The Difference of a Good GP

Having been battling with pretty much every GP practice I have been (un)fortunate enough to cross paths with, I had long since given up on the idea that any doctor would ever be of use to me. I have spent years fighting to get help for each of my many conditions, and every time I have come up against wall upon wall. Of late (since the last rant I had about funding), I had point blank stopped going, feeling that I am happier dealing with my health issues alone rather then deal with any more upset and refusal of the help I need. That is, until now!
Having avoided my GP surgery for the last few months, I completely missed any idea that my old useless frustrating GP would be needing some time off for maternity leave. I got a call a few weeks ago asking me to go in to see her – and was petrified it was to try and take away the painkillers that I know they aren’t so happy prescribing. So I took a friend along to help fight my corner (I learnt very quickly that nobody listens to this zebra directly), and very nervously sat in the waiting room waiting for battle to commence. The door opened and to my surprise a totally new face stuck their head out and called my name.

This doctor is maternity leave cover, but she is truly an angel in doctor for. She had called me in purely because she had been reading my notes and realised I’m on a lot of medication, so wanted to get to know my face and discuss how things are going. After a quick blow by blow account, she had decided that a referral to a rheumatologist needed doing strait away (the referral that I have been fighting to get for months/years), stating ‘your young, you shouldn’t be having to deal with this and if the practice have an issue with it, they can come to me!’ And that my other thyroid hormone needed to be checked (up til now my TSH has always been low suggesting hyperthyroid, but t4 was always normal – nobody had gone further and checked my t3) and surprise surprise it has actually come back abnormal! She also told me she was going to go through all of my notes, research things and read my hospital letters – all of which she has now done! She is now chasing advice from an endocrinology team for me! 

I am literally bowled over by how genuinely caring this doctor is. I have never had any support like this before, and the difference it makes is astounding. I have gone from feeling totally hopeless, demoralised and burdensome to feeling like I have a physician I can actually talk to about my health issues. I even mentioned a little about my mental health, and she was absolutely amazing about it. No telling me my pain was obviously caused by that or dismissing it, she actually told me she was very pleased I told her as it’s important to get the right support in place before it gets any worse! That has never happened before.

I feel like I am dreaming it all. I am dreading the day my original GP comes back to work again as I know that I will be right back in the position I have been in, but for now I will make use of this absolute Godsend and go to the doctor when I need help!

Making The Decision To Have Genetic Testing: BRCA 2

As some of you will know, my father had cancer a few years ago. At the time, it was thought to be secondary breast cancer as it was oestrogen receptive, and therefore would have been a terminal diagnosis. Thankfully, it was cancer of the sweat gland (so rare they wanted pictures!), and after treatment he has fully recovered.

Due to a family history of cancer, he underwent genetic testing for the BRCA genes. It is fairly common in a few ethnic minority groups, and we fall into that category. Up until that point, I hadn’t even thought about it. I knew that my Nana’s mum had died of breast cancer, and my aunt had also developed it (tho is in the clear thankfully). It hadn’t crossed my mind that it was genetic, and I had never really considered that possibility.

Both dad and his sister tested positive for the BRCA 2 gene, and this means that my siblings, cousins and I have a 50/50 chance of also carrying the same mutation.

This news carried a number of thoughts, feelings and emotions. The biggest initial reaction for me was fear. Cancer is not a light subject, and having seen my closest friend die of terminal cancer just a couple of years previously, it is particularly fresh in my mind. I was scared of knowing, of not knowing, of having the mutation and of not. I was for my siblings and cousins – I never want to see people suffer through anything like what Riya suffered with ever again. As it is a 1:2 chance, it is statistically unlikely that all 4 of my sibling group will test clear (though I would be ecstatic if that was the case), and that is a horrible thought to have. I know I would feel guilty if I test clear when another sibling does not, and probably upset if I have the gene and the rest don’t.

At the time I found out, I didn’t want to know. I didn’t want to learn of either result as it was easier to put it to the back of my mind. I haven’t really spoken to people about knowing we have a BRCA gene in our family. In general, I am used to keeping medical stuff back from the people around me. So it feels natural to do the same with this – however this is slightly different. This is something that I can choose to learn, or choose to ignore and hope for the best, but somewhere I know it will always be in the back of my mind.

As a family, we struggle to talk about this sort of thing. We have had fleeting conversations one  on one, but we are yet to sit around as a group and discuss what genetic testing means to us. It is a hard topic to bring up, and I often find myself keeping quiet – we are all independent adults with our own lives. As much as I feel that I would benefit from an open discussion, it may well be that the rest want to deal with it in their own ways and in their own time. This has made making a decision for me harder tho. Perhaps I would feel more comfortable doing this at the same time as my siblings rather then being the first to seek an answer.

As I have had time to think about the possibilities, I am beginning to look past my initial reaction. There are benefits to both decisions, and different outcomes after someone tests positive.

The benefit of finding out is a clear cut answer. Either you know that you are in the clear from the gene, and therefor have the same chance of having breast cancer as any other woman does, or you know that you have the gene. Having the BRCA 2 gene gives you a lifetime chance of breast cancer between 45%-85%, and a risk of ovarian cancer between 10%-30% (which increases from the mid 40s). This is a fairly substantial mark up from the average woman (which is about a breast cancer chance of 12.5%).

If you do find out that you have a BRCA gene, then there are options you can choose to take which will either mean cancer is more likely to be detected early, or that will reduce your risk substantially of developing breast cancer in the future. I have been looking into this in relation to breast cancer – so the below relates to this.

The first of these options would be choosing to have increased surveillance. Even if you don’t choose to be tested, this is something suggested to those with a known family history of breast cancer. This would include yearly breast screening from the age of 30 (in contrast to the 3 yearly screening from the age of 50), and keeping vigilant with monthly checking at home. It doesn’t cut the risk of development, but it would give a better chance of catching it early, thus a better chance of survival.

Another option for those with BRCA 2 is ‘chemoprevention’. This means that you would take drugs known to reduce the risk of developing breast cancer for 5 years, and this could potentially drop the risk of development for a number of years after treatment ends quite significantly. The downside to this is that these drugs can cause substantial effects, so you would need to weigh up the risks with your doctor to decide if this is a good option for you.

The last option, and the most drastic is to have an elective double mastectomy. This would mean choosing to have your breast tissue removed, and a reconstruction, either with your mastectomy or at a later date. The benefit of this your risk of developing breast cancer drops hugely – even below those with no gene present in their family. Obviously the downsides are primarily surrounding having surgery, and if your anything like me, the prospect of not having your own breasts anymore!

I can’t help feeling that I am too young to be dealing with this decision. I may be 28, but the potential effect of this decision has a far larger effect then I care to imagine. I am single, and I can’t help thinking that a positive result would create more problems in the dating scene then those that I already face as a chronically ill woman. This is also something that is an issue even if I choose not to find out. I’m not sure ‘Hey, I stand a 50/50 chance of having a breast cancer gene, fancy a date?’ is much of a turn on these days.

Having been reading and researching the above, I am slowly coming to the decision that for me, genetic testing seems like the obvious path. I don’t want to know that I have BRCA2, but if I do have it, it seems more sensible to find out and take action, however unpleasant that process might be. In this day and age, science has achieved some amazing things, and I feel someone obliged to take advantage when my great grandmother could not. I don’t want to be sitting here in 20 years time facing breast cancer, knowing that I could have done something to prevent it.



The Trouble with a PTSD/POTS Combo

PTSD and POTS are completely different diagnoses, but for me they do seem to feed into each other. With PTSD I suffer periods of dissociation – this can range from a few hours to an entire year (which was pretty horrific). With POTS I suffer from ‘brain fog’ – essentially when I am on my feet for too long, my body can’t pump up enough oxygen to my brain, which leaves me dizzy, spacey and feeling slightly like I’m on another planet.

Both of these symptoms lead to a very similar place, and on occasion I struggle to differentiate between the two.

For those of you who are unaware of dissociation, it is essentially a coping method that most of us use to some extent. In mild forms, its the feeling of arriving at a place without remembering driving there –  your brain gets you there, but you aren’t fully conscious of it. You may be daydreaming and skip a few minutes in a class, or become a bit numb during a crisis. This is all a way of your brain being able to sift information, and enable you to cope with a variety of situations that may otherwise be overwhelming.

IMG_7214Dissociation becomes a problem when it is it its more severe or long lasting forms. With PTSD you develop ‘triggers’. These are situations, words or feelings that can trigger you to dissociate fairly instantaneously. The dissociation may happen if you hear a loud noise, are around people, in difficult situations or your emotions begin to overwhelm you. Almost anything can fling you back into a state of numbness, and its a case of riding the wave and waiting to come back to the real world.

Describing my own dissociation is something I have found difficult to pinpoint. It feels to me very natural, as it is something I have automatically done since I can remember. It is like a switch flips, and all of a sudden I feel fuzzy. I feel that I am not real, and rather weirdly I loose sensation in my body – usually its my hands at first, but this tends to spread to my arms, face and sometimes legs. For me, its the biggest pointer that I am dissociating. When I am in that space, I can function, but I can’t quite communicate properly. I become quiet, and although I can hear people talking to me, I tend to find it hard to understand them or form an answer to speak back to them. It is literally like I am underwater – we all played that game as a child trying to talk to each other in the pool – its almost impossible to understand. That is what its like. When that switch flips, it is also like I am suddenly at a different angle in the world. Its like somebody has picked the real world up and flipped it  a good 30 degrees – everything is just off where it should be, a little bit like stepping into a Dali painting or some Gaudi architecture. Everything inside me is numb – dead. At my worst I felt like I wasn’t real and that continued for a year – it wasn’t fun.

With brain fog, the feelings are slightly different. I become distant. I find that i can’t process information at all – asking me questions when I am on my feet for too long is a futile endeavour. Things like shopping become an issue – I have often gotten home from a supermarket and not remembered what I have bought – it was like a game of surprise shopping every time! I am also more prone to wobbling about, falling and fainting. Often (before I got a mobility scooter) I would end up sat in the middle of the pavement waiting for my body to sort itself out, or ending up sat on the floor in the middle of shops when out – you have to get over the feeling of looking like an idiot if you have POTS, thats a big lesson I’ve learned.

The similarities tho are difficult. The feelings of being spaced out and fuzzy are tricky to tell the difference between, and i often end up feeling sort of numb whichever issue is playing up. With this in mind, unless I know I have been triggered by a particular situation, I tend to play a game of elimination.

I know that with POTS lying down is my best friend for brain fog. If I can’t lie down, then salt is the key. As much as I dislike it, eating a fair amount of salt in one go does seem to get the brain for under control – I now carry around little salt sachets, and have utilised them several times over the last couple of weeks! Wearing compression garments helps (tho they are uncomfortable for me), and I have noticed that I am much more able to be on my feet when those are on without brain fog becoming a major problem.

If those tactics fail, then I know that PTSD is the likely suspect. Usually this means I need to take myself off and find a place to ground myself. Texture is a massively useful tool for me (it differs for everyone), and in particular when I was in group therapy, I got taught to walk barefoot in the grass – teaching myself to focus on finding a sensation is often the key to unlocking the door. Trying to make yourself aware of your surroundings through sight and sound are also really useful tools. For me it can take a huge amount of time depending on the trigger, and the aftereffects can be pretty exhausting. I tend to end up getting emotional when I manage to come back to the real world – for me a lot of dissociation is meshed up with unexpressed feelings of loneliness, fear and sadness. I think my body uses it as a way to keep me safe until I can cope with facing things.

Between the two, I end up fairly confused and pretty exhausted 99% of the time! I am slowly learning to differentiate between the two, but I am sure that POTS makes it much easier for me to slip into dissociation – I am already half way there any time I’m not lying down!