Coping with ‘still’ being disowned

Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.

Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.

Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.

Pain of confusing loss, broken heart

I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.

There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.

To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.

One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.

So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?

This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.

I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.

Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.

If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.

And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.

Wishing you smiles and goodness,

Sending love to you all, xx

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Managing in a new home

Well, what a palaver moving home is when you are chronically ill eh?

It all started so many months ago with packing well in advance so that I could do a little bit each day during my paced daily activity. The pacing is such a crucial part of my pain management so I can’t go overdoing it as then I risk sending my nervous system back into it’s old amplifying ways. But then there’s all the viewings of potential houses, sometimes Magic Dude was at work and I had to drive myself to viewings and take pictures to show him. It all adds up and takes its toll. And it takes its toll for a long time afterwards. Trouble is it doesn’t stop there of course.

We tried to buy a place and had to pull out when we found out there were potential structural problems so we found ourselves back at square one again. Our buyer hung on (and on) (for months) and we eventually found another place, won the bid and then it took ages to actually get through all the paperwork and reach the incredibly stressful moving day. It was all so well organised by us to best manage my health issues but the handing over of the keys was out of our control. Our lovely removal guys were sat outside the new place for hoouurs waiting for us to call them and let them know that we’d finally been given the keys and were on our way. In the end it was so late in the day that they called in a couple of extra guys at no extra cost just to get unloaded in time. They were awesome. But yikes, what a day!

As I now have immune responses to loads of different things Magic Dude and I cracked on with my second paced activity of the day removing the bedroom carpet, under which was a layer of lino and under that was a layer of disintegrating black spongy stuff. It was a messy job so we wore facemasks and got on with filling up rubbish bags and cleaning the uncovered floorboards. Windows open to air it out. Mattress made up on the floor. Eeeeeevrything else shoved into the extension because we foolishly thought we’d be decorating everywhere pretty soon, haha. Silly us!

We have got loads done, though.

First things first… the health stuff:

New boiler because I need to be warm to help manage my pain levels.
– we were lucky to get a government grant via a local environmental charity and after taking some info'(including Magic Dude’s income) we were awarded an additional grant from one of the charity’s other schemes as well. The government ‘Green Deal’ has finished now but it’s always worth checking with any local teams or charities to see what’s available as they receive grants from elsewhere too. Your local council should know who in the area you could contact to ask about this stuff.

Boiler

Loft and wall cavity insulation for the same reason. If I’m not warm I’m in more pain. Simple as.
– we had the work done by energy company EDF as per advice from our local environment team. Many energy companies in the UK offer schemes like this but EDF are unusual in that they are the only one currently offering this service to disabled people who used to work. If you receive contribution-based disability benefits you are not included in many schemes available. Purportedly this is because contributions based disability ESA (for those of us who happened to have been able to work at some point in the past) is more than the income based version but for me personally the addition of about £3 doesn’t make enough of a difference for this to make sense. Yes, I know, whether we used to be more ‘able’ makes no difference to our current state of disability or the help we need now, but hey, the rules are created by non-disabled people and they are politicians who don’t get stuff. What can I say?!

Both these schemes for the boiler and the insulation were brilliant. I am so truly thankful for their assistance I have no words to describe it.

Security.
– also recommended to us by our local environment team was a charity called the Blue Lamp Trust which covers England & Wales. It’s a security charity of which many employees are ex-policeman and so they really know their stuff. They help a lot of domestic violence victims as well as disabled and elderly folk. I’m home alone and non-functional most of the time so I had highlighted a security concern and said I’d appreciate some input and advice. What I actually got was lots of really good security advice on all fronts and even more than that… including two new smoke alarms, a door chain, a door bolt, three different planned fire routes for us to get out in the event of a fire, tips on how to handle cold callers (in person and on the phone), he would have given us a carbon monoxide detector as well if we hadn’t have already gone and bought one, and even some tips for avoiding identity theft. In addition to all that he was an absolutely lovely chap who used to police our area so knew it really well and he didn’t even complain when I made him a bad cup of tea!

Blue Lamp Trust

So (for England and Wales) if you’re one of my fellow disabled or if you know anyone vulnerable (including victims of domestic violence) who would like to feel safer at home I can recommend contacting the Blue Lamp Trust through their Bobby Scheme.

Other than that it’s been typical do-er upper work!

We bought a place with the space I needed as I’m stuck at home unable to work. At the old house we had no space so if I wanted to try to do anything I lost most of my activity time to setting things up and then putting them all away again so I couldn’t actually get much done in between at all. Now we have more space so I can (eventually – once we get the boxes unpacked) set things up then just leave it where it is for next time. Reducing my set-up/put-away time and increasing my quality of life. Hurrah!

To get that space we had to get a do-er upper though. Houses ready to live in were too small and houses with space were in need of er, most things! So we bought a place that was well under our budget so we’d have some money to get it liveable, but we still couldn’t have done this without the help of the crucial grants. Thanks to the grants covering the boiler and insulation we had the money to get the dangerous old 1950s rubber wiring replaced throughout, get the two-level floor (with a steep ramp between the two where a wall had once been removed) amended to one level to stop me from tripping over it when I’m struggling with symptoms and a new kitchen (because we had to rip the very old one out to get the floor levelled).

Ta-dah! Money gone! So now we’re on to good old fashioned home DIY (‘Do It Yourself’).

Gosh I’d love to sleep in a bed! And have somewhere to put my clothes. And not have eeeeeverything re-covered in dust each day! But we’re getting there. Albeit slowly.

Cooking in kitchen

Our kitchen after the floor had been levelled

It’s been nearly four months since we moved in. It’s great to no longer be cooking on the camping stove and I’m chuffed to not have to wash the dishes in the bath any more although I am still washing my hair in the kitchen sink when I can stand up long enough! The shed now has a roof (storage space to reduce the amount of crap in the house!) and we’ve re-purposed the old kitchen units to go in there. I’m pretty chuffed with how that plan came together. Poor Magic Dude was so terribly down about living in such a building site so I arranged a surprise for him – his bestest mate and my lovely bruv came round one day whilst he was at work and we sorted out most of the shed roof. I say ‘we’, but that’s pretty cheeky as I couldn’t do much of course.

He was in shock for several hours after he came home and found what had been happening in his absence but eventually he started nudging me from time to time and then grinning at me! I had hoped it would help him out of the doldrums but the effect was way bigger than that as he got really enthusiastic again and threw himself at the remaining shed jobs with gusto. It was flipping wonderful for us three to be able to help him so much with a plan so ‘simple’.

Shed roof

One very holey shed roof!

I say ‘simple’. None of us had done anything like that before. We researched it thoroughly and then kinda made it up as we went along. 😉

After much removing of carpets, fire-hazard ceiling tiles, wallpaper, filling of holes and cracks, sanding of well, everything… we are fiiinally about to be able to paint some base coats on a few walls. In fact Magic Dude is doing exactly that as I edit this and I want to go and see but can’t get up, waaah! I’ll get to see it later though. And we still have the dyeing and varnishing of the upstairs floorboards to do (another thoroughly researched but totally new endeavour)!

So we’re getting there.

Slowly.

And my pain levels are worse because anything extra throws them out. I work hard to pace my daily activity but have found it easy to get too involved and overdo my morning physio so I then do less for my evening physio to balance it out. This then means that I’m doing different activities to usual and training my body to be more flexible on how my daily activity is grouped when it really is much more sensible to only vary one thing at a time. Still, I’ve done pretty well restricting my activity to the crucial paced time per day overall during all this change, tradesmen noise and long list of stuff that needs doing.

Magic Dude has now driven me to a few Tai Chi classes whilst he’s been off work to try and help me normalise my paced activity a little more. I’m learning a new and challenging style (Chen) so that’s a good distraction to think about between paced physios. And when thinking isn’t distraction enough to help me cope with the pain I resort to immersing my senses in Lord of the Rings Online for a while.

Me, decorating

Sometimes I’m able to help out a bit during my daily paced physio time

So, I guess to sum up: I’ve moved home, I live in perpetual dust, I’m trying to convince my lower torso get involved in Chen style Tai Chi and I’m nearly out of the dangerous tunnels of Moria! 😉

xx

Suicide, the difference between wanting to kill yourself and wishing you didn’t exist

Contact with fellow patients who are currently feeling suicidal is part of the norm for many patients with chronic conditions. Anyone who’s been there ‘gets it’ and if we’re strong enough to support without our own coping mechanisms being compromised then of course we do so. Because we’ve been there. And though we each have to dig ourselves out of the mire it helps when there is someone out there saying “I believe in you”.

The reality of suicidal thoughts is not that someone wants to ‘kill themselves’, the thought of having to do the ‘killing yourself’ part is horrible so you want to find the least horrific way to do so. The ‘killing’ bit is not the point. The point is that someone who is considering suicide can see no way forward. No way out. Their situation has become so overwhelming that their coping mechanisms just can’t balance everything out. This is not a failure on their part. And if you’re reading this and you feel like this right now – this is not a failure. It is human and understandable. And you are not alone in this, there are people out here who understand how you feel and why you feel this way.

It is also not something to be ashamed of. It is understandable that someone with health issues that are changing their life, to the extent that they don’t feel like it actually is their life any more, feel this way. With pain levels so high that is impossible to think, to function or to see further than the darkest of times that currently make the light seem like nothing but a long lost memory. And not just pain. Crawling along the floor because your body is trying to make you pass out. Feeling like you’ve just won a medal because your body has actually allowed you to have a poo and this time you actually didn’t end up on the bathroom floor with your body temperature going through the roof, stomach thinking it should vomit right about now, body wanting you to lie down or it’ll make you faint and meanwhile you watch the room spin and spin whilst your head throbs so hard you just wish you’d pass out and miss having to experience this bit. I mean seriously, when your life has changed so much, no wonder you’re left reeling. And no wonder you just want to opt out. Many fellow patients know about this. You are not alone.

Time and again I’ve heard fellow patients echo my own words from years before, “it’s not that I want to kill myself, it’s just that I wish I didn’t exist”, “if I could just choose to not wake up…”

If you’re feeling this right now, I get it. I understand. I’ve been there.

As Rellacaffa also pointed out, society tends to say “Shhh! You don’t talk about suicide“. And you know what? We should. To not talk about this is to leave all those experiencing it feeling alone, forgotten, left on the sidelines and with no way out other than the very final way. Seriously the number of people who have been through this is huge. And to come through it is truly hellish but, trust me, when you start to build that way-out the light begins to seep in again. There is another way.

And you are not alone. (If you’re feeling these things right now I’m sending you a hug right here, xx)

When I realised just how different wanting to kill yourself is from wanting to not exist, I got stubborn. Why should I be stuck looking at opting out in such an extreme manner when I knew that the situation had overwhelmed me so utterly that my coping skills just weren’t enough any more? Why should I be put in a position where I’m considering giving in, how dare the world work that way? So I decided that I needed to take a new approach or things were not going to change.

When you hit rock bottom you are faced with two glaring options a) opt out, or b) refuse to opt out. But if we want to refuse then things can’t stay as they are. It’s that simple. Things have to change. So the options really are: a) opt out or b) change things.

With our coping mechanisms so severely outweighed the changes have to be of importance to us. And when we reach such an extreme stage in our journey we have to be prepared to take a step back and be honest with ourselves about everything. We get our head to separate out different aspects of our life and allow our heart to be honest with us on each one. Then we have to make a decision about what needs to change. What is most important to us. What will keep us alive? What will make us want to stay alive?

For me my change was to upsticks and move home. Which seems massive when in that state but it was what my assessment of my life at the time led me to and frankly if it’s going to stand a chance of changing things so that the coping mechanisms stand more of a chance of balancing things out then it’s worth it. I had been continuing to live in an area that I used to work in. I had already managed to get my mentally abusive boyfriend to finally go away. (It’d only taken about a year of asking him to go and him refusing. Yep, I was that run down that I couldn’t even call the shots on my own relationship, doh)! And the subsequent fleeting boyfriend had opened my eyes to what life could be like if there was someone who wanted to spend time with me and even help me get out and do things. That realisation that another life was possible was what tipped me over the edge once I was back in my isolated existence again, but it’s also what drove me to push for the changes. I wanted a life. I accepted my health issues, but I did not want to accept the unnecessary additional negatives too.

For others the main change might be having to give up work to remove some of the stress levels and allow for better pain management, or contacting the local pain management team to ask about training in handy psychological tools for patients with chronic conditions. Certainly a change of focus is required and we need to point ourselves firmly in the direction of life and refuse to dwell on health stuff. I mean we obviously have health stuff in our faces all day every day, but there’s a difference between productive temporary thinking and circular negative thinking. The first can be useful when required then put to one side so that life can happen, the second takes over our continuous present so that life gets squished out of the picture. We deserve to have an existence that we want to hang onto. So we need to figure out what it is that we want to hang onto and what it is that prevents us or makes us feel like we don’t want to hang on. What is it that lifts us that we can get more of by changing something? What is it which brings us down which we can remove or change so that we are not quite as overwhelmed?

Talk to someone you trust, whether near of far, allow yourself to put what you feel into words. If there’s no-one you’d feel truly comfortable doing this with then contact a support line, or get referred to a clinical psychologist (often also available through pain management teams) who can help you to gain handy tools and to figure out what needs to be changed. You deserve this support. You have a right to this support. It is part of the health issues you face and you do not have to do this bit alone.

I know many fellow patients who have also been through this. And their strength and optimism probably means that others do not realise that this is a part of their (our) past, but coming through this has that effect. We are stronger, we know ourselves better, and quite frankly when you’ve stared that option in the face and found another way instead then you know that you can handle anything that comes your way. So there isn’t just another way, it is one heck of an amazing path that can lead you to places you currently can’t see or imagine, but we all started where many patients are now. Where maybe even you are now. We were there. We understand. We ‘get it’. You are not alone and there is another way.

Love and strength,

x

.

Additional links for medical staff:

Experienced nurse in multiple areas, Isy Aweigh writes here on some hugely important tips and insights for medical practitioners with potentially suicidal patients.

Michael Negraeff, MD, wrote last month of an experience with a suicidal patient here, and his thoughts link in with Isy’s article above.

Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x