The Lighthouse Keeper

I was watching one of my favourite films today Half Light with Demi Moor, 

It`s a romantic thriller set around a light house. I wont tell you much more because you really have to watch it if you haven't already.

Well it got me thinking about

 

1) how romantic a the Welsh coast looked and the village where it is set.

2) I would really like to holiday there. 

and ..

 

3) How nice it would be to be able to walk to the very top of a lighthouse, look at the view, with a gorgeous man by my side....... without collapsing and having the paramedics come and rescue me half way up the bloody lighthouse!!!. 

They would have to rename the film to Half Dead!!!!

Anyway I also thought about how isolated it must be on the lighthouse, and how the lighthouse keepers must have felt, watching out to sea all day, all alone, only getting to see people when they did their weekly shops, 

 In-fact exactly how I feel, well almost, just no sea or rocks or ships...  well not right outside my window anyway, yep that would be far more interesting.

We the chronically sick feel like we are looking from the outside in most of our lives, we watch the world go by through windows, the Internet or from the sidelines of parties, like wall flowers, because we came, but have no energy to actually party.

It is so hard feeling like life is passing you by, hearing of how our friends are doing this and that and saying "ah you should have come it was ace"..... yep and you reminding me I didn't is ACE too.

My hubby makes lots of jokes about me and my "comfy chair " like on a trip to the beach he said ,

" Ah best be getting back, you`ll be missing your chair" 

or when I mentioned how nice it would be to live in the house that looked onto the beach.

" Yes then all you would need to do is wheel your chair down to the sea and sit with your laptop"

Now I know he was joking, but behind the joke I feel there is a tiny bit of feeling that I sit in my chair all day every day ( which I don't, only on bad days, which, OK out way the good ATM ) on purpose.

I got to thinking, I suppose my comfy chair is my lighthouse.

 I look through the window most days, watch the passing dogs taking their owners for walks, the mail person nearly knock said owner over on their motorbike.

I watch the birds come and go to the bird bath, which I monitor on a daily basis, like a good lighthouse keeper checking his ... what ever he checks.

Then once maybe twice, I jump in my boat, well the bus, and go to the town to do a food shop.

Now this for me the chronically sick one, is where I may socialise for the time, perhaps a coffee with a friend, a quick conversation with the shopkeeper. 

Then i jump back in my boat ... yes we have already established its a bus... use your imagination.

 When I jump out of the boat, the tide is in and I have to climb the rocks back to my light house.

Nooo, I`m not crazy because when I carry shopping and try to walk it feels just like trying to walk against a current of water up to my waist, and the hill ( OK slope) up to my house .may well be the rocky mountains of rocky mountain places up to my lighthouse.

Recently however I did purchase a shopping trolley, which breaks my heart, as in my mind only old people use them. 

It is now hidden in the back cupboard in the unused room so my hubby doesn't find it, an either laugh or think  I`m.........

However dragging that thing up my hill..feels like I`m dragging the freaking bus.. Er i mean boat. no, no, NOOOO

Once back I sit in my chair just like .....

So when my hubby comes home and says as he always does

" how have you been today?"

I will reply 

                  " I have been a lighthouse keeper"

SO WHERE ARE THE COMFY CHAIRS???

OK I wasn't going to write another post quite so soon, leave it a week or so, so I don't burn out too quickly.
Because my life as you may have gathered, involves  me sat on my comfy chair in my living room.
Soooo not too much to write about unless you would like to know how many birds visited the bird bath today, or of how me and my toy Labrador had a disagreement over who finished off the pack of cookies..  I say it was him .. and I'm sticking to it!

By the way my toy dog is my hubby`s idea of a joke because I have bothered him months for a dog, Not funny!!!, in fact remember if you will an episode of sex and the city, where Tray bought Charlotte a cardboard  cut out baby?? yep get the idea?

Anyway back on topic I felt a sudden urge to tell you all about my day. whilst it was fresh in my mind and I was still passionate.
To be honest I really want a whinge to people who may understand.

Yesterday I went to a ...

Pain management introduction session 

"Wow and YEAY" I  heard myself cry, when I finally after weeks of being on a list received The letter. 

 The letter said this is an mandatory introduction to the pain management clinic and not a one to one session.
My wow and yeay has now gone to "huh? oh no" visions of myself sat in between a circle of people saying
  " Hi my name is Jo and I'm in pain". Not good.

After much debate and thinking I came to the conclusion that if I would like to see if there is any alternative medications that didn't ..

1) Make me retain weight ( and i have already told you its the toy Labrador that eat the cookies )
2) Make me constipated, to the point where I disappear at a dinner party for an hour crying in the toilet because I cant poo.
OR
3) It actually takes away the pain.

I would need to go to the meeting.

On the morning I was going I could finally take my 7 day ECG monitor off relief, until my hubby says

" I think you should keep it on for the meeting, as if its to weed out any drug seekers at least you look genuine, plus you have a solid reason you need to bugger off early... your a suicide bomber hahaha"

Thinks he is so funny!!
But annoying enough he may have had a good idea, so off I go itching and wriggling.

Ok I may have gone with a little negativity, but hopefully with an open mind and the thought maybe it won`t be too bad.

I walk into the building follow the signs to a room with a lady at a table in the entrance, she told the waiting queue to find their name and sign in. She then gave me a name badge ...... alarm bells..

I look into the room Phew no chairs in a circle, good sign, however the projection screens and booklets hmm a little worrying as too how long we were to be here ..
" 2 hours!!!!" I heard the man a few people in front of me shout.... my heart sinks.

So I take my seat among the mass of walking sticks and zipper frames, on a seat that was very small, very hard and too my mind not what people in pain should be made to sit on for 2 hours.

No I am sorry, Some of you out there may have even been to a session like this and really enjoyed it.

But for the love of god....... who in their right mind would make people IN PAIN sit on a hard little chair for TWO HOURS to listen to doctors talk about pain??????

Rant over ...

Still I sat with the thought , this will be worth it, this will be worth it.... Then came the words

"This is only an introduction, after which you will be placed on a weight list for 2 - 18mths"

At this point being a suicide bomber really appealed to me!!

We sat and listened to Dr Hayes talk quite a lot about why we get pain, different types of pain and what the difference between  different pains were.
In fact all we could ever want to know about pain. whilst, wriggling and fidgeting about IN PAIN. 

By this point they had realised that people where looking a little distracted and fidgeting, (cant think why), So much so the rather strong for her size lady in front, swung her arm back and promptly smacked me on the head. (I was trying to txt on my phone discreetly caught out )

So we are told we could walk about for a few minutes. At which point I promptly head off in search of coffee, thinking of a table of refreshments they may have laid on...

Nope, refreshment consisted of a glass of water the lady begrudgingly fetched from the staff room for me, as the tea and coffee vending machine had broken down.....

DEAR GOD!!!!

When we went back inside they talked about different drugs .. (er I mean medications), now even the old guy in the corner who had been asleep for an hour woke up at this point,

The audience did I must say get a bit rowdy at this point, in fact I swear I heard the rant of
" give us our drugs, give us our drugs now"
Although this could have been just me in my head,

She, the Dr talked about how perhaps the weaning off of the stronger meds such as morphine may be beneficial, and replace them by other technique's. which had also been mentioned earlier when talking about relaxation, and positive visualisation., yoga and mediation.

" So if I come off my morphine where do I go from there?"

shouted a large tattooed man from the back

" Meditation, and yoga" says the Dr but we will discuss options when you get an appointment.

I have two things to say ...

1)  They have made this poor man listen to Them for two hours only to tell him they can't tell him anything untill he gets an appointment

and

2) I'm not a judgemental person or one to stereotype people but who could imagine a large man clearly involved in a biker group meditating his way through yoga to relive his freaking pain!!!!!

So home and rested,  I await the honoured appointment.

Still in pain,but at least I have a coffee and sat on a god damn COMFY CHAIR !!!!!

SO HAVE I PASSED ???

All throughout life we have taken or sat tests.. spelling tests, exams, practical exams, driving tests and probably many more.

We patiently wait for the results of these tests to hear whether we have passed or failed, what grade achieved and where we go from here.

When it comes to test of the medical kind, we have waited patiently for a yes or no.. Yes you're pregnant, no you don't need glasses and even yes you have cancer.

We are programed to expect results either positive or negative to any test we take. ...

So what happens if there is no conclusive yes no, pass or fail answer??

More often or not, this for us, the chronically sick, is a reality, we may not get conclusive answers,instead we get responses like ..

"Well its not showing this" or "Its showing this and er well we are not really sure" and "Although we know its not this we still actually don't know what it is, but hey we will do another test"

Even if we get a definite answer we don't then get the actions that usually proceed a medical fail, such as...

" Ok you have .... so we will do this,and this and then you will be fine" instead we have responses such as ...

" Ok hmm take this pill and this pill, but we don't know if they will work, if not er not sure, how about a pain clinic?"

Sound familiar?  

 Still we endure them and they range from the uncomfortable to the downright painful to the embarrassing.

Here's a few I've endured, I'm sure you have many more.

The blood test

Now depending on how experienced your nurse or the doctor is depends on the experience you have, and if you're anything like me it counts! 

Iv had nurses that have been fantastic I couldn't feel a thing bliss. 

Then I have had the handfisted clumsy oaf who forgets there is an actual person attached to that arm. 

One doctor in the ER got that flustered after the third attempt at putting a cannula in that I could have actually felt sorry for him, if it wasn't for the fact there was not blood all on the floor and running out of my arm!!.

The ECG

This test involves them placing stickers over your chest and sometimes back and legs, They then attach wires to the little metal poppers on the sticker so they can read the electrical pulses of your heart. 

This may take a few minutes laying flat, or 24-48hrs or 7 days where as you carry the recorder device around with you. 

I have had all of them over the course of a lifetime and most recently over the course of two years as like now... 

Now I am walking around like a Cyber Man with wires everywhere, and I`m going to be like this for another 5 days arrg. 

I have tried covering them up with scarves, but in a 32 degree temperature I either die from heat exhaustion or I`m stared at even more for being the only person in the country wearing a god damn scarf!

Then there`s the itching after a while the sticky tabs start to itch, itch so much I'm sat on the bus either scratching my self in various places like a flee bitten dog, or I'm trying to ignore it and end up wriggling like I need a wee.

 Now the upset and paranoia has set in, lets face it who wants to be laid in bed next to a Cyborg, 

 ...I'm thinking my husband is going to be repelled. 

This is not helped by the fact i heard ..

"Hmm I'm not going to cuddle you I may yank a wire out by accident"

So I lay in bed, again in 32 degree heat, with a bloody t shirt on!

Talking about feeling my husband will be repelled.. 

The few minute ECG ..

I had been taken to the ER on day, as usual first thing they do with me bloods and ECG. So the nurse says take your bra and top off and lay on bed, hubby is stood in corner, usually he is not in with me. 

So there I lay, and if you're anything like me, boobs go to the side, well mine practically disappear under my armpits!

 I do not allow my hubby to see this at home, its either bra on or laid with arms positioned to avoid the bad boob look ... come on ladies you know what I'm talking about!

Anyhow here's the worst bit the nurse actually lifted up my boob to place a wire underneath..

I was MORTIFIED !!!

These are only a couple of examples there are also the..... 

MRI tests ... 

Where Iv found myself in a tube realising I need a wee and I'm actually claustrophobic!

Echocardogram test...., 

Which is basically a ultra sound but combined with Fibromyalgia not good as the probe instead of gently gliding over my ribs feels like a brick smashing them. Again this depends on how hand fisted the sonographer is... 

And yet again we encounter the bad boob look!!! ..

THE HEART CATHETER test.... 

Which involved placing a thin tube up my groin into my heart and camera through that.

This is where I found myself naked from belly button down, trying to explain to a lovely male student nurse holding a razor up,... 

Than I had indeed given myself a Brazilian, and didn't require his assistance...

This took some time!

 I suppose some good results have come out of my tests iv been able to share with you a few stories, share some of my experiences and hopefully you have had a little giggle in which case my tests came back ...

Positive :-) 

 You can also follow me at ..

https://www.facebook.com/pages/Chronic-illness-support/290993151091842

MEDICAL MUGGLES THE GOOD, THE BAD AND THE CUTE

From being a very young age we are taught to respect our elders, respect our teachers respect authority and most of all to respect the medical profession. The doctors/consultants/surgeons  "quite literally we put our lives in their hands" as my mum would like to say. The ones with all the answers to heal and mend us, but what if..         

THEY DON'T HAVE A CLUE???

Every appointment I go in wide eyed and enthusiastic, hopeful that this time they will have the answers "the magic pill". Every time I come away let down and disappointed vowing I will never see that doctor again! Which of course I do, or I swap to another and go through the same roller coaster of emotions again and again. 

Even worse if I swap as with every new doctor comes the look of horror when I list my conditions. 

 Its not just hope and disappointment that we can feel when dealing with the medical muggles ( The not chronically sick ) its fear and doubt, fear that they won't believe us, fear that they will think we are exaggerating our symptoms or drug seeking. 
I even find myself praying that the they find something bad in my blood results, or in one of the many other tests I have to endure. In fact sometimes I think  "OMG  I have that Munchausen syndrome thing"

So much to this I find myself worrying when on a " good " day when I can walk a little faster than a snail, what if Dr Disney ( my consultant, and yes he is really called Disney) is driving past and sees me and thinks oh she is ok, she is walking fine, nothing wrong with her!

Now you may think this is a very odd thing to think, but only in Australia would this happen. Well infact it did, well as close to...

On a rare day I had arranged to meet a friend in a coffee shop near my home, I had seen a lady with two dogs on the field opposite playing a little too close to the road for my liking. So on seeing my friend sat at a table, I walked in telling her the story, not too loud but its a very small shop. I walked back two steps to the counter and I heard  "hello"  which I completely ignored as it would not be me, I don't know anyone.

( a brief explanation , I am from the UK and live in Australia )

Anyhow again I heard "hello" I turn round to see OMG Dr Disney. I then promptly turn bright red and waffle nonsense and find myself giving a not needed explanation as to why I was in the coffee shop like a guilty pupil being caught out by her teacher Arrrrg.

The other emotions we may come across whilst dealing with the medical muggles are emotional attachments or...

 THE DR CRUSH!!!!

To my mind sometimes when we the chronically sick see more of our doctors or specialists than we do some of our own family and under such emotionally charged reasons. it is understandable we may form emotional attachments to the medical muggles. After all they see us at our worst, most vulnerable and may sometimes have mopped our tears. Again it is understandable that we feel that they see us more than a medical number they see US. 
Now I don't mean this in any sexual context whats so ever. What I mean is we think they perhaps are our friend or confidant.
One example of this.. I swapped Dr`s for locality reasons, and I actually felt guilt and worry that I had upset him almost like I was cheating by seeing another. In reality he would have not noticed or bothered in the slightest as I was Just on patient in probably hundreds walking through his door!

What happens if your Dr is younger than your granny / grandad, has their own hair and is quite frankly a little bit cute???

Here comes the CRUSH. Still not a bad thing in my mind, I mean what's wrong with a little eye candy, little bit of the old butterflies when you have to go and face sometimes nasty procedures? NOTHING!
As long as you see it for what it is a little crush to see you through the horrible bits and nothing more then fill your boots you deserve it you go through enough
My crush is yep you probably guessed it ..

DR DISNEY

I let myself indulge in this crush as I feel its my minds way of helping me deal with what i'm going through, and besides I know he is too young for me, is happily married and sees me as nothing more than a medical number .... Oh yeah and I love my husband lol
It did also help me through a particularly difficult procedure, a camera was to be passed through a tube to my heart via my groin. To help get me through was coffee chats with my muggle girlfriend deciding what Disney character shave my lady garden into!!! 

So my dear chronically fabulous  and muggles thats just a little walk along my path of medical discovery. Sure I have more tales to tell and thoughts to voice but for now ..

lots of gentle hugs 

chronically Jo

p.s you can also catch me at ..

https://www.facebook.com/pages/Chronic-illness-support/290993151091842
http://www.pinterest.com/chronic-illness-support/

A WALK WITH THE MUGGLES

                                          

            

I have lots and lots of subjects that I want to cover regarding my journey. A lot of paths would love to walk you down.

However I think the first path that really urges me to take you and indeed myself down whilst writing, is the rocky, emotional and sometimes frustrating path which is RELATIONSHIPS.

 A path that is riddled with hidden landmines laid unexploded for weeks,days, months even years, which we as the chronically sick and you the MUGGLES (as I kindly refer to the healthy ones as) have tiptoed around, stumbled on and yes on occasion fell on and ... BOOM !!!!

Now when I say relationships I don't just mean our partners for life if we are lucky to have, but our relationships with parents, siblings, friends, even the medical profession.
For believe me that can be a relationship for good or bad, in fact my consultant has seen parts of my body more frequently than my husband, even to the extent I think has he seen that bra before!

Here are a few things us chronically awesome folk would like you dear sweet  Muggles to know ...

 I also think that Muggles come into shall we say categories. 

Now I suppose in this sense I just mean just our family, friends ect. AND  this is certainly no disrespect to any of my love ones, as I do love them with all my heart ! and I cant push that strongly enough as ...
 A) I mean it
 B) I know they will be reading this and ... BOOM !!!!

Ok here we go ...

. THE IN DENIAL MUGGLE
 
In this case I mean my dear dear old mum, who is 75 and miles away from me. On the phone she will ask how I am, when my doctors appointments are and how they went. Then promptly hides it away in the back of her mind when she is with me in person. She knows somewhere back in her mind Im sick, but acts like I'm ok, like I'm just tired and will be fine after a cup of coffee ( that would be tea but yuck).
In person she will never ask me how I am feeling as this then will make it real, she will say come on lets do ... when Im clearly unable to leave the sofa.
With this reaction I find myself pushing myself, doing more to keep up the pretence that iv just got a cold. Then comes my frustration, sadness and anger. I end up shouting " MUM IM SICK IM NOT GETTING BETTER" and feeling guilty after for breaking her bubble when she replies " I know dear " and ... BOOM!!

. THE OVER CAUTIOUS MUGGLE.

In this case Muggles, my children, whom I love with every bone in my body my world.
My children bless mainly my eldest would have me wrapped in cotton wool on a sofa 24/7 my youngest I suppose is a little more lenient and usually to my frustration always right.
One example I was visiting family and only had a short few weeks so I wanted to try and do as much as I possibly could and ok I pushed it to far my body said
" I HAVE GIVEN YOU WARNINGS, NOW LAY DOWN AND STAY DOWN!"
Hmmm which yes resulted in a whole day and half in bed. Now my eldest went mad
 " you've done too much again, you wont listen you wont learn, I cant believe this I told you and told you." and I shout back "BUT DON'T YOU UNDERSTAND IT WAS WORTH IT TO BE A MUGGLE FOR A DAY!".... and   .. BOOM!!!.

. THE WHEN ITS CONVENIENT FOR THEM MUGGLE

Now this is in my case is a friend, one who again I love with my heart, and one who I know doesn't even realise they are doing it.
They are the friend that listens, understands what your saying, and sits have cosy movie nights with. UNTIL THE EVENT, this could be a shopping trip a night out we have planned together.
This is when I find my self sat in a corner alone, feeling tired and upset that I cant party too, feeling sick and needing to go home,  and frustrated that the friend has gone dancing without a care in the world has totally forgotten the fact I cant do this any more. Next, next comes my anger and wanting to scream "ONE NIGHT, ONE NIGHT YOU COULD HAVE SAT WITH ME"
This however soon leads to guilt for not wanting her to be carefree for a night... and... BOOM!!!

THERE ARE LOTS OF SCENARIOS I COULD TELL YOU AND YOU ME, BUT SOMETIMES YOU'RE LUCKY TO HAVE ...

THE OTHER MUGGLES.

In my case three ( well four my husband who tries his very very best)
,
One Munkey Muggle, who I have known for such a short time, but understands, listens, and has been there every step encouraging me.

One that has been there a little longer and is a non Muggle and is chronically amazing. she has been through so much but yet has the time to listen to my illness stories.

One that has been there forever, reads every post on my page I think, because she quotes them in what she says bless her.

And this ladies and gents was just i little short walk down one of many winding bumpy paths I have found on my continuing onward journey

much love
Chronically Jo

HOW IT BEGAN

       I remember the days my journey through chronic illness began two years ago. I had started a job as a chamber maid at a local hotel ( why I did this hmm not a clue, but may be explored in a separate chapter).

I started to have really sore feet, and feel very tired. My new work mates said "ah you're not work fit yet, you will be fine". Instead of getting fitter as time went on as you would expect I started getting weaker hmmmm . 

Ok firstly between my husband and myself we established something wasn't right, then the merry-go-round of doctors and specialists began as did the medications still no real answers except you may have an autoimmune disease!! 

In the end after a course of methotrixate I began to feel dreadfully out of breath, fatigued and very poorly. Went to doctors who promptly sent me to the hospital.

Now this is when the big bad bombshell is dropped, we can't see any evidence of an autoimmune disease however you have got heart failure mouth opens in shock!!

I was in hospital for 12 days in which time I had MRI scans Echo cardiograms the list goes on. 

Soo I still coping with with shock goes searching for answers to the constant pain, enters Dr Pengilis with his diagnosis of Fibro .

So there we have it I have one illness that wont kill me but can't be cured and one that will kill me and hmm maybe if i have a transplant be sort of cured .

Now this is the beginning of my journey in a very short nutshell, and by all means not the full story.  No the full story, well this is about how i came to have heart failure, how I coped with and still coping with the shock and how I am trying to live a life with my illnesses.

Hopefully my journey will be similar to yours, maybe not but I hope you will feel you have the time to peek in now and again and maybe even comment.

This is a new part of my journey trying to turn something rubbish into something that will help me and hopefully you. Also please check out my page on Facebook.

https://www.facebook.com/pages/Chronic-illness-support/290993151091842