Challenges Ahead!!

Yikes!!! A whole month since my last blog! No apologies - that would be too much of a cliché, ha! Just an explanation ....! The gynaecology appointment a month ago really took it out of me, and between the affects of that, and the need to rest up because I had the cardiology appointment coming up too, I had little choice but to stay more or less offline. I've now had my first cardio appointment, which went ok, I think - but again, the after affects haven't been very nice. My eyes / light intolerance have stepped up a notch and I'm having to wear a mask for at least several hours a day, and the rest of the time I spend in dimmed lighting. My pain levels are pretty bad too, and now not only do my feet go grey and blue when I'm upright, but my legs go grey right up to half way up my thigh!! Kind of scary to be honest. I've really wanted to update you guys on how things are going, so I'm basically going to post the note I posted on Facebook after my appointment, with some additions I've been working on a little at a time ever since. Sorry, no pretty pictures today, and apologies in advance for all the long sentences! I'm just too tired to make it read more easily.


Ok, so - here's the story....


I saw the registrar (the consultant was really ill with a virus he didn't want to give me, so he just popped in to intro himself then left it to the reg to do the work, lol. I thought that was quite nice of him to be honest. Both the doctors and the nurse who sat in were really lovely, so that helped an awful lot with my nerves! I was so worried that my M.E. diagnosis would cause them to not hear anything I had to say without prejudice. I can't be sure, but I think maybe it was ok - the registrar said that he had a friend with M.E. so maybe that went in my favour!?!

Unfortunately the clinic didn't give me somewhere to lie down when I got there, and I was dumped in a busy waiting room with noise and lights and craziness. Not a good start. I was sitting for so long that by the time they took my blood pressure and pulse, they'd sort of plateaued out and weren't too bad (I don't know about others with Orthostatic Intolerance, but after a couple of hours my blood pressure seems to adapt, though the blood pooling is often still there) and there isn't time in one short appointment to keep me standing for longer than a couple of minutes to take readings. He seemed to take my own recordings at face value though. (he could easily have decided i was either mad or a faker, so...!)

The outcome of the appointment was that he's ordering a tilt table test (Which I'm honestly seriously scared of even though I know it has to be done. It's not just the physical strain of it, but also, I think it's going to be quite triggering being strapped to a table with little or no control - brings up some abuse issues. Blah!) and a 24 hour holter monitoring. Not sure when those will be done - but he's not left me with nothing in the meantime. He's prescribed insane amounts of sodium chloride (Sustained release tablets, 600mg, TWO tablets FOUR x a day - yikes! - Apart from anything else, how on earth will I remember that/fit it in??!!!?? Lol, I can barely remember to take meds 3 times a day, and that's with multiple alarms set on my phone, without which I'd be screwed!!) and said to continue drinking a minimum of 3L of water per day. It's a really high dose of salt that they've prescribed, but because I know it can be tough on your body, I decided to stagger it, starting on a lower dose and gradually increasing. I'm relieved they wanted to start some treatment straight away though, (and I know salt is basically the first line treatment in many clinics, so I was prepared for that) because knowing the NHS it may take a while to get the tilt table sorted. I suppose there's even a chance I could have improved a fair bit by the time I get it. I guess that would be a little annoying because if the tilt table test shows nothing interesting, can they even diagnose me??? But then, that would mean the treatment is working, and I guess that's the most important thing anyway, right? Hey - a girl can hope! ;)


The aftermath hasn't been pleasant, as I said ... and I think it's been worse than after my gynae appointment (not surprising considering a) I was looked after better at that clinic, put somewhere quiet and dark to lie down while I was waiting, and b) I had been still recovering from the first appointment!) but I do feel relieved to have finally seen a cardiologist - sheesh, it's taken long enough!!!!!!!! (I've only been having these symptoms in varying severities for 15 years HA!)

The next few months are going to continue to be challenging, to say the least. I have another gynae appointment this month. My Disability Living Allowance re-assessment forms have arrived, sigh, so I'm going to have to have appointments with an advocate to fill in the forms - and unfortunately the one I normally see has just gone onto maternity leave so I have to be re-referred and have a new advocate assigned! (Mind you, I'm lucky the department is there at all, because last time I saw my advocate, their budget had been cut significantly and she was concerned they couldn't last much longer!) I'm pretty scared about the assessment, because it's hard enough to get through it even without the major shake up going on with the benefits system right now - huge amounts of people are being denied benefits on reassessment, and if I get the wrong assessor, or medic, I could be seriously stuffed!! I have zero trust in the system now, let alone the people actually working within it!

Then we're still fighting social services to try to get direct payments (to pay for Anna to care for me) - they're on the verge of making the crappy decision that I don't need Anna in particular to care for me, and because she lives in the same house, they will only give me money to get an agency carer - which would cause me more harm than good! My GP isn't helping my cause - my social worker has repeatedly contacted the surgery asking for information from her on my condition and how it affects me, but she hasn't bothered to reply!! (And this on top of the fact that she still hasn't organised the vitamin d regime or any of the countless other outstanding things - and we can't even get through to the local patient advocacy office on the phone!) Then of course there'll be the tilt table test at some point, and a cardio appointment on the 20th December, which basically sucks because Christmas is going to be a write off for me after that. Last year I barely made it through a few hours with family and the after affects were awful! An appointment right before that .... I'm not even sure if I'll cope with dinner with my family.


Frustrating!


I feel so overwhelmed by all this happening in such a short space of time, and I have no idea right now how I'm going to cope with it all. But really, I have no choice but to cope, so I'm just trying to take it literally one day at a time. I'll try to keep posting as and when I can - though that's going to be further complicated because I have to send my laptop back to the company I bought it from because it's all but died. I should be able to borrow my mum's sometimes but it's just that extra step that'll make it harder to get online. I just hope it can be sorted swiftly!!


I'd love it if any of you guys who haven't yet joined me on facebook would connect with me there too - that way I can keep in touch a little easier - just click the link on the right sidebar & send me a friend request with a note letting me know you came in through my blog. :)

I hope you're all doing ok - I've missed spending time with you all! xxx

Reader Question for People With POTS : Which treatments have worked for you, and which haven't??

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Challenges Ahead!!

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Guest Post: Things Social Workers Investigating Possible Abuse Need to Know

Hi everyone :) Susannah invited me to post my latest blog post on her blog as a guest author.  I'm a fairly new blogger, writing about dealing with the effects of childhood abuse, and trying to raise awareness and speak up for those who can't speak for themselves.  If you'd like to read more of my posts, feel free to check out my blog: All The King's Horses. 

I hope you find this post helpful!

Puzzled Hat x
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I read an article on the BBC news site yesterday and it made me really angry. It's a piece about how intervening adults don't listen carefully enough to children they are concerned about.  Nor do they pay enough attention to the concerns voiced by other adults about those children. There is so much emphasis on supporting the parents that the voices that need to be heard are often sidelined... and that is just not okay. 

I understand the need to provide help to the parents or guardians of the children about whom concerns have been raised, but surely it is more important to listen to the needs of the child?  When I was growing up, a number of people contacted Social Services because they were concerned about the welfare of my siblings and I.  I'm not sure who exactly reported things, or what was said (except in one case where a family member raised their concerns)... but nobody ever did anything to help... nobody ever listened. I still feel hurt by that today.

The thing is, people investigating possible child abuse/neglect cases need to listen much more carefully and not just listen with their ears. Every time a social worker came to our house, I begged silently with all of my heart that they would 'hear' my voice and that they would help us. But my voice was truly silent to them.  I tried to tell them in other ways. They didn't hear.  There are a few things that social workers and other investigating forces really, really need to know and understand...

1. An abused child is NOT going to tell you flat-out that they're being abused.  

There are several reasons for this. The most obvious being they've been told never to tell ...and the fear of what will be done to them or the people they love if they do is more than enough to keep their lips sealed.  Kids aren't stupid. Telling something without a guarantee that they'll be safe after telling is a really, really bad idea. 

2. The 'family' you see when you visit is very possibly a total act. 

In an abusive family, there are unspoken and spoken rules that require its members to behave in certain ways in order to present a 'normal' front. But please, use your eyes! When social workers visited my house, everything on the inside of me was screaming for them to see beneath the surface.  Watch the subtle reactions of the children and the adults in that house when they act out their interactions. Please, please don't just listen to the obvious communications.  Please don't assume that if a parent is appearing to be affectionate, that all is well. Look for signs of repulsion underneath the smiles.  Look for well hidden flinching.  Check for the looks,  body language and cues between family members and trust your gut.

3. Talking to family members together and expecting to hear the truth is foolish. 

The dynamics of an abusive family are incredibly complex and if you think that discussing things all together is going to give you the information you need, you're wrong. Be assured that every move the abused person/people in that family make will be heavily under guard of the abuser(s).  An abused child cannot tell you what is happening when they know they are being closely watched by the one hurting them.  Even if you separate the children from the adults and try to speak to them that way, it's not likely to work. The family dynamics are far too powerful, even if you have just two family members together.  Do not underestimate the power that the presence of another family member can have.

4. Don't expect all the children in the household to be in the same situation.

I remember one time a social worker tried to get me and my siblings to tell them what was happening, through drawing pictures on a big piece of paper all together. I can tell you now, if you'd have done that with me on my own away from my siblings, you'd have seen something very different.  There were things being done to me that I was trying to protect them from knowing.  There were things done to me that weren't done to all of them because they were 'good' and I was different. They knew that and even they were monitoring what I 'said' or drew. Even with my parents out of the room, I was not safe or free to say what my insides were screaming. Please, speak to the children individually.  I cannot stress enough how much of a difference that might make!!

5. Be aware of the consequences of your visit.

Every time a social worker or other investigator visits an abusive home, there will be consequences for the abused.  The very fact that you are there, means that someone said something.  It doesn't matter if it was the person being abused or not, the abuser(s) will assume it was ...or that the abused child was somehow careless at covering things up.  There will be consequences. Please, don't just file away your report and forget about the case, even if you didn't manage to get enough evidence to take action. Please check on the child... even if it's away from the home. If you don't, they'll feel like you're someone who just came  and made things worse and didn't care enough to come back. 

6. Little things can make a difference. 

There was only one social worker who visited, who came back. She didn't take any action but I get the feeling that she suspected something. After her first visit, I wanted to die. Literally. The consequences were bad and I felt as though no-one would ever hear my silent cries for help.  I felt abandoned and ready to give up. Even though that social worker obviously didn't get the evidence she needed to take action (and I could tell you exactly why she didn't), she came back one last time to give me a teddy bear. She probably will never realise the difference that made. Okay so it didn't stop the abuse.  It didn't get me out of there. It didn't make the pain go away.  But for a child who was at the point of wanting to just curl up and die, it was a flicker of hope. A simple act that said "I care". It was one of the only things that ever said to me that someone might have noticed something.

Finally, please remember that children are not stupid.  They need to know what's going on.  If they're anything like I was, they want to be prepared for what's coming next and to do that they need information.  Explain what's happened and what's going to happen.  Don't just leave them and move onto your next case. Tell them if you're going to come back or not. They might be holding on in the hope that you'll come back and rescue them.  I know I did... but no-one came. No-one heard.  No-one made it stop.

I wasn't able to speak then, but I am speaking now... and I hope that my voice will speak for the children who can't speak for themselves today.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Guest Post: Things Social Workers Investigating Possible Abuse Need to Know

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