Yet another horrendous week

I have been back and for to Shropdoc been back and for to hospital twice. Once was to be admitted and was promised there was a bed for me from the doctor at the out of hours service only to discover there wasn't so I ended up begging to go home rather than be stuck in a wheelchair all night uncomfortable and unable to obtain my medication.

After examination by a doctor I was finally allowed home as there were no beds.

This weekend has been pretty much the same.

Got up all bouncy on Saturday morning wanting a shower and hoping to go shopping. Got to the last step at the bottom of the stairs with Steve's help and I screamed with pain searing through the whole of my body. I was in spasm and could not move. My medication had already been taken so was not able to take any more.

Due to the out of hours service advising us on Wednesday morning not to call them out again for this problem Steve went to a neighbour who is a nurse. She said we had no choice but to call for an ambulance. Paramedics arrived gave me gas and air but what I really needed was a muscle relaxant injection which they are not allowed to give due to my conditions.

They then called the out of hours doctors who in turn came out at 3pm and administered said injection. Steve asked if we could have the medication in tablet form to prevent having to call them out and they refused saying that they had to have some back up for when my medication fails and besides the injection works quicker than the tablets.

So that was me shut down for the weekend.

Hope everyone else had a better time of things than I did

Best wishes

Fee

Sunday

Sunday was the worst day for me for a very long time. I was in so much pain my medication would not hit it. I ended up screaming each time I moved. Steve was at his wits end. I jsut said "I want the pain to end" I was begging for it to stop. Nothing was helping. In the end things seemed to go from bad to worse no matter what medication I took, muscle relaxatants, anti-inflammatories, pain killers, anti-sickness and despite the dose having been doubled only the Friday before nothing was working.

In the end we were desperate and rang the Samaritans at least they listened to both my husband and myself and could hear the distress we were in.

They adviced we telephoned NHS Direct who in turn telephoned the out of hours doctor. Luckily for us it was my own GP.

He has given me yet more medication to take on top of what I have already got and gave me an injection in my bum to settle me down for the night.

This meant I spent the whole of yesterday sleeping waking up in pain taking medication and sleeping again. I could not manage food.

Today I cut back slightly on the medication but when I crawled to the computer room and typed something the excruciating pain was back. I screamed. Steve bless him fetched my medication to try and keep me going.

So my writing at the moment is going to be sporadic "my poor diary is going to be neglected" sorry Simon I just have to do what is best.

I just hope I can cope better soon and that we get a diagnosis soon enough.

I just have to be patient and wait.

Best wishes

Fee

The good the bad and the ugly

All I am these days is tired or grumpy. Poor Steve gets everything the good the bad and the ugly thrown at him. The other day I was so cross I picked up my prothesis and threw it. It missed and bounced off the wall. Its only a piece of rubber so it won't do any harm anyway.

I had a new carer come yesterday with my experienced carer. The new one hadn't seen a mastectomy before so I knew she felt awkward and put her at ease especially with the "trainer" my friend being there I knew if I stepped out of line she would reassure the trainee. Anyway I explained what the trainee would see and what not to expect. We showed her my prothesis and how it fitted into a swimming costume or piece of underwear and then it was time for my shower. This was when she saw the scar and was not unnerved as I had pre warned her. I know its not my place to do this but we all have to start somewhere. I am lucky enough to be open and honest of how I am with with what has happened to me. It is still a loss and sometimes I look in the mirror and wish both had been taken not just one.

Last night I tried a top on and I know when I wore it I would have to wear my prothesis with it so that I know I will feel special in it. I looked at Steve when I was trying it on and asked him what he thought he was as honest with me as ever and we both agreed the prothesis would make the top. Decision made.

Side effects of my new regime of medication are terrible temper, anxiety, sleepiness, nausea and just feeling a general nuisance to everyone. I get so weary I fall asleep or yawn at the drop of a hat.

No warning just gone. I am beginning to look like a panda.

Mind you one thing about all this is I have gone child like. I can't have alcohol due to the medication so sweets have taken its place they are cheaper and last longer.

Sherbet Dip Dabs, Chewits, liquorice allsorts, jawbreakers, wham bars, black jacks, fruit salads you name it I have them. Its like going back in time. Shame Spangles got banned.

Best wishes

Fee

The worst week ever is now over

I have not been feeling great for a while but the symptoms are not permanent they come and go sporadically. So I am patiently waiting for a scan.

My back locked up in front of my paid carer on Thursday morning. She just stood there as due to "insurance" she is not allowed to help me move. I fully understand this as they are meant to have two care workers to lift someone once a diagnosis has been made".

This has now meant that Steve has had to give up work to care for me as I keep have these "moments" when I can't move my neck downwards apart from my left arm and my head and of course my mouth. Steve said the other day "I wish it was her mouth she couldn't move". I know its because I get grumpy when I get pain and I am scared its all natural when something like this happens.

So as of now Steve and I will be together in the house as much as possible. This means a new timetable has to be set up of antibiotics (yes yet another lot to take) and my painkillers and muscle relaxant. Antibiotics have to be timed an hour before food this therefore has a huge bearing on the timetable.

Once I have my muscle relaxants I am completely doped up and out of it so have to be monitored to stop me falling over or harming myself.

Also to incorporate into this timetable is "me" time for both Steve and I.

On top of that I want to keep busy with my writing and my charity work.

Sometimes things seem a huge task but if I break them down and just deal with one phone call at a time I am fine.

It is just the here and now I have to cope with. Not one day at a time but one minute at a time is how I am living right now.

Best wishes

Fee

Death

With the news of Jade going home to see her boys today it brought back the thoughts I had about my own death.

I have already told Steve I want to be cremated to "Come on Baby light my fire" and "Burn Baby Burn". Coincidence happened when my sister and I a couple of years ago were talking about death and I informed my brother in law what I wanted to happen. He looked amazed and when I asked why he asked if I had found out from my sister what she wanted. "No" with a puzzled expression on my face. He burst out laughing and said you can tell you are twins. We want exactly the same thing.

That day we went out for lunch and while there I knew exactly what I wanted from the menu my sister and I at the same time both spoke at once and the same words came out. It is uncanny at times that this happens no matter how hard I have tried to prevent this happening.

Now I don't have much to do with my sister but I know if she really needed my help I would no doubt offer it as usual but for now the void is large.

I just hope one day her bitterness ends and she can enjoy life again to its fullest.

This is why I battle on

When I was 22 I didn't think about health or life insurance and when I did land my first permanent job I tried to obtain it. Unfortunately by this time I had already had an operation and the insurance company needed me to be free of the condition for 2 years. Eighteen months later I was unlucky enough to have yet another operation on the same site. This is the result.

Now I fight so that the young ones can have a better chance of having what I could not have due to the fact I was ill. I didn't see myself as ill I just thought I have had a lump which has been removed and carried on working. Some days I wonder why I bothered to carry on working.

With the recession hitting everyone people are wondering if it is worth working at all or whether to go on benefits to try and claim everything that they can. Those that know the system seem to get everything and the "newbies" have no idea of how the system works and get put back to the end of the queue.

The phrase those that shout loudest comes to mind.

Last night I had Shropdoc out on a visit to me. Yes I was so bad I actually had to get a home visit. Normally we make the trek to the hospital and manage that way but last night it was impossible. I went into spasm from my neck down. I could not move my right arm, hand, back, legs or feet. The only things I could move were my head and my left arm.

I was given diazepam to ease the spasm and needless to say I was completely out of it this morning when Steve went to work. I didn't even open my eyes to say goodbye.

Steve even arranged for our neighbour to let my care worker in as he knew I would be groggy. The spasm has eased now and I am able to cope but I do worry as to what has caused this.

Never mind no point worrying just got to get on with things I suppose.

Best wishes

Fee

Making Progress

Little did I know what things were going to lead to from appearing in the media and how it was going to affect my life. Many people think when you appear on tv you get paid for it. Believe me you don't. You may be fortunate enough to get gifts but don't bank on it.

This is how I knew Steve was right for me and that my life would be happier with him than without him.

I have come a long way

I have come quite a distance since 2005 but to me it never seems far enough I always strive for more. Wanting things changed now not later.

Unfortunately life is not like that.

This was me nearly at rock bottom. I had been through worse in 2005 but this was make or break for me and Steve.

I am lucky I was able to take advice and moved on with my life.

Update

Well it seems things are conspiring against me. My cough has reappeared so hence I did not go swimming last night.

Steve as ever is supportive. Each time I cough or let him know I am in pain he suggests Hospital. This is a pain as I know we can't afford the car parking.

I just wish there was a solution to our problems but there does not appear to be one at the moment.

All I can do is keep hoping that I can stay positive to keep going.

Steve suggested opening a bottle of wine last night but to me that would be causing a downward spiral so we refrained from that.

My thoughts are all over the place at the moment and I can't understand how I feel dark clouds are looming but I try and dispel them. I am determined not to take anti-depressants or rely on other medication to help me through the day.

I take the bare minimum of pain killers as they aggravate my other health conditions.

That was why I was so hoping to go swimming last night.

Will see what today brings and who knows I may feel a bit better I am glad I can write as this helps me concentrate on how I really feel.

Today

I have not been feeling great for a while so decided to diarise events so that I have a record of what is actually happening to me. Also this can be used as a record for my GP and those that need it including the DWP.

Woke up this morning swollen joints as normal. Steve passed me a mug of coffee. This was fine for a while until my hands started to ache so he took it back again and placed it on the floor. I wanted a drink of coffee again within a few seconds the mug was broke and coffee spilt over the carpet. Why? I can't grip things for long in my right hand when it swells and the pain is intolerable.

I have a care assessment on Tuesday afternoon so will see what that produces.

Finally had a response from the DWP today my care rate has been raised a little to Middle Rate care but only until October 2010 as the future of my conditions are uncertain.

Still waiting for scans at Gobowen to be undertaken and no news yet on that score.

So have no idea why I feel like I do.

Just trying to keep going as best I can at present. Hoping to go swimming tonight as my cough has eased up.