Departmental Bingo

Hospital-Vocabulary-bingo

I would have won by now if I was playing it with hospital departments as I mentioned to a friend of mine the other day.

Another one was crossed off last week, Rheumatology. I’ve been diagnosed with Fibromyalgia as well as all the rest.

So the list.

Neurology, Rheumatology, Dermatology, Physiotherapy (MSK and Neuro), Urology, Speech and Language Therapy, Colorectal, Psychiatry (Liaison and psychotherapy), Opthalmology, Surgery (maxillofacial and gastro), Radiology, phlebotomy (vampires), general practice and emergency departments of course.

All within the past 10 years.

My body is failing me, it is just getting worse and worse, no respite. Some days I can barely move, walk, see, use my arms, you name it something is wrong ever day and you know what? I’m sick of it.

I try to be as positive as I can be, it’s the only way to survive when you have chronic degenerative conditions, but it’s so hard. Everyone has off days, I tell myself that when I can’t make myself move off the sofa to make myself a decent meal. I tell myself that when I am under a black cloud inundating my face with rivers of tears.

I have to joke about things, it’s a coping mechanism for all the manure that gets piled on my life. I joke about how many departments I’ve been under,  joke about the problems I have to make light of them, I try to make anything that is going on have a silver lining.

But some days I just can’t do it.

The tablets I’m on mean I don’t plummet into the dark as badly as I did in the past, I’m relatively numb, but sometimes my body belies the emotions that are obviously still there. I will cry without feeling the sadness, I will rage at people without feeling the anger, feel sick and shaky even when I don’t feel the actual anxiety. It’s a strange way of being and I’m not sure I like it, but if they stop me from doing anything stupid and allow me to not do anything stupid then I guess they will be around for a while.

Today is not a good day, but the clouds will clear, I hang on to that thought,  cling to it with my fingernails if necessary and wait for the sun to show its face.

 

I am alive…

…and very sorry for not saying so sooner.

I could not face opening this program, writing a post, reading how people were doing.

This blog, that had started as such a catharsis, such a wonderful place to voice my internal madness had become….well a chore, another job that I just didn’t have the energy for physically or mentally. The bigger it got, the more people I talked to on here, the more pressure I piled upon myself and when I relapsed last year, crashing spectacularly, well I abandoned everything that took energy including this.

I’m not sure I will be back really, not in the way I was. So much has happened since I last wrote on here and I think I may have changed too much to come back as I was, as well as the worry that I will again succumb to my addictive personality and not be able to function without it.

For those of you who I do not have on facebook for one reason or another, please know you have been in my thoughts. I have hoped you are doing well, that you are finding improvements slowly but surely and you are enjoying your lives, found myself thinking of you (usually at the strangest times) and imagining you at your best.

Love you all my WP family xx

The lack of sexual health in Leeds.

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Have you ever tried to get a full sexual health screening done? I’m talking swabs, bloods, the works? Well I’ve had most things tested for but to my shame I’ve never had the full screening done to find out whether I have any of those lovely little darlings that sometimes take a piggy back along with you on your sexual exploits.

With all the health problems I have at the moment I thought that now was as good a time as any, especially after my ex and his rather dubious reasonings behind sex, to go and see what (if anything) is going on ‘down there’.

I looked up the Sexual Health Clinics for Leeds and got confused, so asked my nurse yesterday while getting bloods taken…she gave me a lovely list of walk in clinics, their addresses, opening times etc and off I trotted home to have a look.

You know what? Apparently now I’m over 25 I’m not supposed to want testing for these diseases! More than 70% of them were for ’25 and under only’. I’m confused, shouldn’t I be having sex now I’m over 25??

gonorrhea-superbug1

Not so much any more, it’s fighting back but still

Anyway I found one near me that had no such label, it was open this afternoon so off I went to find it (Thank you SatNav on my phone) and embarrassed as hell in I went. Guess what? They don’t take over 25’s any more either!!

Now I’ve been trying to ring the GUM (Genito-Urinary Medicine) clinic for the past couple of days but only ever get an answer message…not even a warning that it is one, just a rambling voice telling me what I already know about their opening times. They don’t even have the decency to answer the phone so I can try to book an appointment. The clinic has walk in sessions but they’re notoriously busy and the web site says to allow 2-3 hours waiting time even if you get there at 8.30am before the place is open as they suggest!

So what am I supposed to do?

I can’t make an appointment because they don’t answer the phone

I won’t be able to sit there for that long waiting with the amount of pain I’m in

I can’t get in to any of the other clinics because I’m too old (there’s another one I’ll try tomorrow but I can’t even ring to check as their phones are only manned in clinic hours)

 

I’m absolutely furious at Leeds Teaching Hospitals right now! I’m furious at Leeds Sexual Health testing services in general.

It’s a major city in this country, filled with people out getting drunk, meeting people and having sex with them pretty much every night of the week. I’d say the majority of the people in this city are over 25 years old and yet we are the ones that are given the least chance to be tested for something that the NHS keeps making adverts to encourage us to do!

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A real government funded add campaign about the joys of STI’s

I’m not the only one either, even the receptionist at the clinic I went to today has the same problem and encouraged me pretty vehemently to fill in a feedback form and complain. I did…I ranted and I hope they listen. As soon as I got home I went onto their website, found the ‘Contact us’ section and filled out a form on there too where I had more space to tell them just what I think of their ‘service’ and how annoyed I am at the whole ridiculous situation. I even gave them my email address so that if they have any excuses they want to give me they can try but I will say now that whether it’s financial or resource based I don’t care!

I can only hope this situation is not the same anywhere else, that you can find someone willing to test you for sexually transmitted diseases without having to fight through the miasma I am.

They don’t know who they’re up against on this one, I will fight for those damn tests and win!

 

More questions than answers

I started this yesterday and didn’t know how to proceed without sounding like a whining, paranoid, google obsessed, hypochondriac.

I’ve decided there is no way to avoid most of those but I feel the need to write down my worries so…tough! ;)

Have you ever used google to look up your symptoms? I admit it’s a bad idea in most cases because even the simplest of symptom lists can give you some very scary results. However in some ways my scientific brain just can’t resist the temptation to try and figure out what’s wrong with me myself.

So…I looked the other day at the whole ‘coughing up blood’ thing because well…it was scary and I couldn’t not. Plenty of scary results, most of which I just ignored and when I went to the doctor managed to forget about most of them again.

Yesterday I went in for my blood results from last weeks fasting blood test, nothing to do with the chest infection but I did wonder whether anything would show up. Now most of it was clear, no deficiencies, no diabetes etc..all good so far right?

But then came that little phrase that it’s never good to hear…’Here’s something that’s unusual and I wouldn’t have expected…’ My levels of Serum Albumin are low (the proteins that make up the fluid surrounding blood cells) and my red blood cells are enlarged. Pretty much as soon as I got home I couldn’t resist looking up what they might mean.

The same thing keeps cropping up, with the cough, the albumin, the macrocytosis (big RBC’s) and it says TB. Tuberculosis, consumption, a nasty bacterial infection that caused a lot of deaths before antibiotics were discovered.

I wouldn’t have even thought twice about it except for the fact I never had my TB inoculations as a teenager, one of the few people around without a big dint in my left arm from the injection. Today when I see the nurse to have my blood stolen yet again I’m going to ask her about getting tested for it, if I don’t have it then I want the inoculation! With the paranoia about my health on a high I will mostly also be going to a sexual health clinic for a check up…not that there’s much chance of anything being there but still, I feel the need to check and make sure. That raises a whole load more issues mind you and it will be a toss up whether my anxiety about getting tested outweighs my anxiety about having something.

Okay, time to get ready to see the vampire again..hopefully she manages to find a vein as easily as last time.

Earth Day! Think Green

Happy Earth day! I loved this quotation so much I didn’t feel the need to write it all up again myself ;)

‘Pet therapists’ aka ‘How Toby saved my life’

scienerf:

I’ve been reminded of how much difference a dog can make recently so thought I’d repost this :)

Originally posted on scienerf:

I was in a pit of despair, riddled with anxiety and paranoia. My life had been ripped from me by the diagnosis of MS, I knew too much yet nowhere near enough and from the bottom of that pit all I could see was dark clouds and lightning bolts of bad news.

I felt that my world, my life had ended. I saw no future except pain and the loss of my independence and no matter what the multitude of counsellors, psychiatrists, neurologists, nurses and GP’s said I couldn’t believe that there was anything else.

Then I saw the one silver lining in my life. I could finally get the dog that I had wanted to for the past few years but never had done as I was working too much and wouldn’t have time for it. I didn’t know how long I would be able to cope with it…

View original 506 more words

An the results are in!

Those little lab monkeys have done their thing and all my results are back. Guess what! I have a chest infection, shocking really huh. The phlegm, coughing, blood and generally feeling crap wasn’t a dead give away then?

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Not my chest but nothing like an x-ray to brighten the page

 

Unfortunately by the sounds of things (from the one side of the phone conversation I could hear at my GPs’ office) it’s not a cut and dry one. There was a patch that wasn’t inflating properly when they took the x-ray but it wasn’t as wide spread as they expect from a chest infection. The GP, a different one again, listened to my chest in a much more thorough way and found a quiet spot so she’s doled out the antibiotics. Here goes a week of popping tablets that will probably give me the squits, shoving my head over a bowl of steaming water and crossing my fingers.

The thing that was a little worrying was the fact the doctor said ‘..and if it’s not better in a couple of weeks we’ll send you off for another chest x-ray’ with a look on her face that was pensive. For someone who is a renowned hypochondriac that was not the best step that GP could have taken!

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This was me on Monday when I started coughing up blood and was in agony from pulling a chest muscle (ever tried breathing with a pulled chest muscle??)

Ah well, I’ve started my bacteria killers and just need to remember that although when I am sitting still on the sofa everything seems okay (until the next coughing fit comes on) I am poorly. It’s so easy to forget when the pain killers are working! So easy to get up and think…’Oh that lawn really needs mowing, it’s dry now I’d better get it done’…and head on out in the garden only to find half way through getting the lawnmower out of the shed that I’m out of breath and in pain.

Do I give in?

HA! Of course not, that would be far too sensible.

My lawn is mowed now…I may be dizzy, hurting and still struggling to catch my breath but it’s done. I wish I could carry on and get some more cleaning or gardening done but my body is no longer co-operating.

To-plant-a-garden

You know what between the MS, the muscle pain that might be Fibromyalgia, the chest infection and the mood issues I sometimes feel rather trapped in my own body. The mind wants to do something but the body rebels, the body wants to do something but the mind rebels or best of all…the mind and body know they should be relaxing but the other bits of body are literally aching to get up and move!

I may not have DID but I certainly feel like I have a whole load of different parts of my arguing amongst themselves.

Luckily the post man delivered some presents packages today so I have different films to watch. I seem to have become a little obsessed with Batman recently and am working my way through every film made in the past couple of decades, I forgot how many of them have been made! I think I’m at a low point at the moment though with ‘Batman and Robin’, Arnie really spoils the whole thing to my mind.

I did get 101 Dalmatians the original cartoon through too though so I can sing along to that later if my chest lets me get enough breath to do it ;)

Right I think it’s time for a nap, since I’m having to sleep sitting up on the sofa I’m not managing to get a full nights sleep really so napping is more essential than ever in order to stop me becoming a zombie.

Cat-Naps

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