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Im back !


Its been a long old time since I last blogged this is mainly down to feeling thoroughly rubbish – which I more recently I found out was due to having an infection.

A week ago Friday I was rushed into hospital with a temp of 40.6 and I was totally out of it ! On arrival at the hospital I had a rather batty nurse – she was lovely and looked after me very well- initially the  doctors suspected I had a chest infection – so I was sent for a chest x ray and ten moved to ward B16 the respiratory ward – i was given my own room too, most probably due to the d n v but either way it was a bonus. I has various blood tests which showed i had a raging infection but thy dont show the location either so – i was having IV anti-biotics 4 times a day as well as my usual cocktail, although i had my syringe pump removed and now i just have cyclazine to use as and when – which is a much better solution I think.

 

One night i was happily watching Eastenders and i hear mumbling… i turn around and see a old lady with long grey hair and a zimmer frame looking at me, I smile out of politeness ….. she turns her zimmer and heads her way in to my room still mumbling and grumbling . I press the nurse call button….. she sits in the bed side chair “where is he” she says  i asked the obvious”who” she replies  “da” she replies i told her he wasnt here, and given she was about 90 i did wonder. Eventually the nurses came and ushered her back to bed.

Each day I was promised the gastro doctor would come and see me for both the D n V and to rule out the infection being appendix or bowel etc …. eventually turned up and was terrible, “so you have cancer” was one of his sentances. Anyways he wants to see me as an out patient.

All throughout this i was struggling with seriously low blood pressure 75/48 and alike which was and is making me feel all wooshy headed and collapse. One time was a corker i was on my way back from the loo and my head was spinning and i just went slap straight onto the floor – i had to call for the nurses to help, including a big chap, whos first words were, maybe next time we can meet over a drink lol … they helped me up and down i went with a bang albeit slighly ore controlled this time.

 

The conclusion of this  week stay in hospital….

infection of unknown location now gone

Low BP – ignore and it will go away

D n V  -ignore it and it will go away

 

 

So i am now using the wheelchair much much more incase i fall. its extreemly frustrating – im keeping my fluids up as im told that my help.

 

But Im home and i missed my little people loads D is growingup loads and wants to be so much like mummy and K who is nearly 8 has hit teenager – and is a lot of fun. G has done a fantastic job of keeping the house going –  i just wish i could help more.

 

Im smiling because of my wonderful hubby and kids

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Still smiling – but with help (arm pic)


It seems like ages since I have updates – I actually think its 4 days which I guess in blog terns is quite a lot. Truth be told I have mostly slept since my last blog.

I mean that literally all I seem to do is sleep, one day I went for a nap at 1am and woke up at 4am .. talk about sleeping your life away…

So the syringe driver that I went home with si working well I haven’t been sick once (touches wood), I developed a lovely allergy to the dressings

, but thankjfully the district nurses had various ones to try. The district nurses have been amazing – I have known some of them since October with my bback so its lovley to see them, yjeu klnow the kids they know the dogs and most importantly they know me and know I look when I am ok. They currently come out every day and refill my syringe driver and whilst they are there every other day they change the dressings on my arm, which incidently is looking fanbloodytastic its amazing here is a pic…

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I had the doc round the other day, my GP to see how I was and stuff – the mutual decision was made to start happy pills as I have emotionally been struggling, so rather than having them for depression per say, its situational at the moment. But who knows – I do have a history of depression, from regular depression to post natal. We are just waiting for the medication in liquid form so it can go down the peg.

Talking of the PEG im still 99.9% reliant on the peg now – I am trying things – the other day I tried a cuppa soup I managed a few tea spoons of that and a tiny bit of mega soggy bread ! and I have had ice cream a table spoon at a time. I am getting in creasingly frustrated wit this – I have time that my swallow just doesn’t work – the mechanism just doest work – I have time where I choke and tiem where the pain is simply too much… and that’s all just with water. I try to taste food from g’s plate and its like I have forgotten what to do with it. But its not likr I can taste it anyways….

I have found myself making goals for the future some of which may sound small or pointless but for me atm they seem huge

MY GOALS

• Eat Christmas Dinner

• Go On Holiday 2014 (pennies permitting)

• Not be afraid of eating to drinking in front of people

• Not be so self-conscious of my facial/ mouth problems

• Make my sewing our second income rather than a hobby ..

• Be a stronger person

Now its time to go back to bed –

still smiling xx

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As weak as a kitten…


Well friday, after seeing the palliative care doctor (not end if life, but symptom control), who added as drug to my syringe driver and gave me the ok to go home.

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This is Sarah the Dr  I saw and she was THE kindest doctor, she was amazing and I even loved her dress (it was from … Pepper Berry and yes i asked lol)

I can honestly say she was the most supportive doc i have ever seen – she took on board your concerns and made sure you were feeling ok about the decisions which were being made – which inevitably would affect me.

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Just before i left i spotted this to, a LEAF  – i asked what it meant …. I was told by an amazing health care assistant who has helped me loads (pic below) thats they place leaf pictures above the beds of the patients who are at risk of falls’s. I thought it was great.

 

Especially as i did have a fall whilst i was in hospital and didnt want to shout about it ..

imageThis is another amazing member of staff – she never stoppped working and was just so so helpful and lovley .

 

I got home via hospital transport and i will admit i found it bloody hard work – i was so bloody tired and jiggling round didnt help, I got home to discover that the syringe driver (as per video) had come out so we had to call out the district nurse!

 

The next day, saturday,  my aunty,Uncle ands Nannan came round it was great to see them and the kids had a blast – I love that my littler miss “i dont like people i dont know reallly well” loves her great nannanand great aunty and uncle so so much

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imagemummy found the energy to do our first plat

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We then went off to the hospital to collect this … and for a few appointments – i will update appts later as i am soooo tired

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What my furture holds


I have been thinking about this a lot recently and it was dragged kicking and screaming to the surface  today, when we took the children to MacDonalds and I say and cried – not coz i love the food, although i did love a chicken sandwich meal, but I cried because I cannot eat – my last actual meal was the end of Jan. I was sat there thinking I know what that tastes like and I can smell it – but i have no taste – I cannot eat. I felt throughly lonely and “different” it was a very cold and unwelcome feeling.

If I am to think about the future I should get my taste back in a few months – but even then I have half a bloody tongue which doesnt work very well – compared. With all the therapy in the world i will never go out for steak chips with mustard again, never have a date night with hubby at out favourite place in stamford as spicy food is and will be a no go for years to come

Even now when i manage ice cream, its messy, i cannot lick my lips. its embarressting, at 30 years old i need something to wipe my face (i hear the jokes of well im  a messy eater etc but not like this)

I wonder if i will every be confident enough to eat around people.

all of this may seem trivial but if your reading this – please do this …. stick your tongue out — bite your tongue enough to stop it moving– now swallow… that is easier than me swallowing now. I have massive pain which i can only liken to having triple tonsilitis and a throat infection.

Silly things i will never, blow a raspberry with my kids, lick a lolly, whistle for my dogs.

 

I have notice people treating me differently as soon as i start speaking – in shops etc – and rightly or wrongly I feel its down to my facial drop, again it may not seem much to some but I am constantly aware of it – it affects my already pretty shitty speech, i can feel it is in the “wrong” place and mostly how it looks – i don’t look “normal” like me – how i want to look. The scars are pretty bad – as in there’s lots of them but i don’t really mind them. But the mouth drop I HATE IT

 

Not one doctor or nurse has spoken to me about my drop since i was in hospital for my operation. Its like its OK its no biggy – Im inclined to disagree !

 

And the cherry ontop of my day was being asked out to dinner buy someone close who – im hoping was just having a brain fart or mad moment – as i was so bloody thrown by it – but i tell you what its made me feel shocking

 

ahhhh I’m ok – its healthy to have a rant and get it out of your system – or so they say

 

Wonky smiles

 

xxx