Sunday, 24 May 2009

TB or not TB that is the question?

I have discovered my eldest nephew has TB. Now it appears that the asthma I was diagnosed with in November possibly isn't asthma. I am symptomatic of TB and really hope it isn't. I had the injection while at school the BCG to prevent me getting TB but as I have a low immune system I seem to get everything that is going. The reason I am at risk is any close family contact with anyone with TB and inhaling their breath from a living environment is more likely to contract the disease rather than a one off meeting outside the home. As my nephew was living with us prior to us getting married this is where the infection may have come from. My nephew has contracted it from living on the streets at a young age. Hopefully things will now improve for him.

I had a chest X-ray on Friday and will get the results this Friday. The TB nurse was really helpful and tried to put my mind at rest but as I have had close contact with my nephew it is a possibility. My husband will be checked as a matter of routine later on but the TB nurse was really concerned especially when she heard me coughing on the phone.

So I am in the middle of a waiting game. My nephew has medication to take for the next nine months (yes the length of time for waiting for a baby to arrive).

Oh boy my life seems to be a waiting game for various things at the moment.

I am coping as best I can and have turned to TFT for assistance too. This is certainly helping in reducing my stress levels.

This is having an impact on all my plans at the moment and I am trying not to let anything get in the way of what I want to achieve.

I just have to cope somehow.

At least it isn't lung cancer which is what he was being tested for for many months. The worry has been immense.

Best wishes.

Fee

Wednesday, 20 May 2009

Coping

Well last night was the first night I started taking my "mild" anti-depressants. Tried as I might to get some sleep, I was tossing and turning and unable to drift off into a long sleep which I am longng for. Yet again I had to get up and visit the bathroom. Yet again I returned to bed I even watched telly to alleviate how I felt and in the hope if I found something good on no doubt I would drop off to sleep half way through it.

All my hopes of getting a good night's sleep were dashed. It didn't happen.

Why have I been put on anti-depressants? Since mother's day I have had suicidal tendencies and I was trying to cope with everything like benefits not coming through when they should dealing with debts and trying to keep on top of everything else. Meanwhile my body is saying enough is enough and causing me more problems with other symptoms rearing their ugly head.

My back constantly hurts. My legs swell up and look like tree trunks. The muscle spasms are still occurring and I am trying my best to be positive but this positivity disappears at night when it is dark outside. A black cloud seems to loom above me and takes over my mind with one thought only I ought to get out of here.

During the day I try to conquer this feeling and do my best to be positive. The lack of sleep makes me tired and I get crabby. I am only human after all. I suppose in a way I am lucky I am still at home. Look at Spike Milligan what an inspiration. It is this that keeps me going.

I suppose people who have a talent no matter what it is will also have black moments and feel they can't cope.

I am lucky I have the support of my husband without who I would not be here today and he knows that full well.

I feel like a split personality desperately trying to stay positive while all around me is collapsing in disarray.

I am like a coin I have two sides one positive the other negative. I try to hide the negative side but that is true life we all have burdens to bear.

I am fortunate in that I can be honest with myself and others in what I have endured and am enduring. I have a counsellor and now my medication. One day I will beat these feelings and be able to lock them up in a box but for now they are scattered on the floor and have to be tidied up just like I have emptied out a large old school trunk.

I will keep going and one day everything will be tidy, in its own space and place and it will then I will be able to be at peace but in the meantime I am like a ship riding out a storm.

Best wishes

Fee

Thursday, 30 April 2009

More problems

I have been dianosed yesterday with cluster migraines. Oh boy this was a shock when it hit last night. I have had migraines in the past but this was scary.

My left eye swelled and pain spread down my face. I could not cope with light and felt terribly sick. I was quite scared. We phoned the doctors straight away and was given an appointment straigtht away at the out of hours service. We got there and the doctor was extremely kind.

I thought it may have been a link to Bells Palsy again something I have suffered with in the past.

When he told me it was a cluster migraine I was relieved it was nothing more serious. I have a lot of medication at home and luckily some of that will treat this condition.

I was relieved to be going back home. Poor Steve was up and down like a yo yo in the night looking after me as I was unable to pull the covers back onto the sofa where I am sleeping and during the night I ended up moaning in my sleep so he came down to comfort me.

I am glad it was nothing more serious.

I have had enough of being ill.

Best wishes

Fee

Sunday, 19 April 2009

Struggling

I was hoping to have finished a cot blanket. I had completed all the 64 individually knitted squares and then hit disaster last night. I could not get them to sew up correctly. My hands being swollen does not help but I was determined to give it a go. Steve looked at my efforts and took it around to a neighbour. She commented on one of my seams and that made me want to make it perfectly. I therefore tried unpicking the seam I had sewn only to discover it was not a seam I was unpicking but the squares themselves.

So I will endeavour to try again and make the squares match up again.

I hope I can complete it as I am not a defeatist.

Best wishes

Fee

Wednesday, 15 April 2009

Hospital again

I am off to hospital today. Can't believe this time last week I was getting ready for a bone scan. Today I see a rheumatologist so a long queue at the appointment desk before being herded into the main waiting room only then to be called to whichever clinic area I need to go to.

I just don't understand why when you have an appointment you can't go straight to the clinic area you need to go to especially if you regularly but that is not the procedure. The reason is that at the appointments desk is where the notes are stored and when you arrived your notes are passed by a secretary to a WRVS volunteer who then calls you from the main waiting area.

When I was a medical secretary many moons ago the notes were automatically with you at the clinic and you just passed them directly to the consultant as each patient arrived and they were then retrieved at the end of each appointment and transport arrangements were noted for those that needed them.

So am not looking forward to this morning and the queues at all.

To have to pay for the privilege of parking is also another necessity for me oh well at least I am prepared and have my £2 ready.

Just got to drag this weary body off to have a shower and brush up and then climb into leisure gear in case I end up having further tests that I have already encountered lets hope its not another visit to the "Vampire" blood tests to you and me.

Not lost my sense of humour but nearly did in the last few weeks I have had.

Hope everyone else is ok.

Best wishes

Fee

Friday, 10 April 2009

Another Hospital Appointment Looms

Yet another hospital appointment looms. They seem to be coming like buses you wait for ages then they all come at once.

One thing I am doing though is counteracting them with positive things to do as much as possible like trying to sit on the sofa watching DVDs with my new husband (still can't believe we not had our honeymoon yet). What matters most is we get through all this together.

Honeymoons are a luxury we can ill afford at the moment what with various hospital appointments not knowing when or where I will get a call for the next appointment. This feels like a nightmare at times.

I am desperately trying to stay positive so that the severe depression does not win. It is so hard to do this as the slightest thing can bring it on.

I do what I can to alleviate the symptoms I try not to rely on too much medication and this seems to be working but there are days when I am human and get down.

I want to change the way things are done that get me down and I want it done like yesterday. I know I am not alone in the form filling nightmare with regards to benefits and feel that there should be a better way forward than what there currently is.

I counted up my consultants yesterday so far I have 10 and yet I still have to apply for DLA nearly every six months and these forms are a nightmare without the help of someone who knows the wording that is wanted for these forms it is nigh on impossible to get the benefits you are entitled to. I know I have been there too many times and in January finally got someone from the DWP to help us with these. Even with their help I have only been awarded DLA until 2010.

This means more form filling next year. I wish I wasn't so ill I wish I was "normal". I used to run, skip, jump and really enjoy life now every day is full of pain of some sort whether it be physical or mental it just drains my soul.

Some days I wake up and think what is the point of today, what can I do to make a difference? If I feel too ill the answer is rest and do nothing. Other times it is get out there and complain to my MP or write letters or campaign in anyway I can to try and change things.

Other days it is just putting my thoughts on to paper that helps me through the day.

Best of all I love surprising people as to see the joy on their faces means so much to me.

I just wish things were different in so many ways but they are not. They have happened for a reason to me and I have to fathom out what I can do to change things to help others who follow this horrid journey.

It is not all doom and gloom as I say I hardly sit here feeling sorry for myself I try and change things one way or another.

Whether it be a phone call to say thank you to someone and cheer them up makes a huge difference to me.

I just have to cope as best as I can. No one knows how they react until it happens to them and that is the honest truth. No one can say I would do this and be certain they would. I know I have been there and come out the other side. I am still doing that with various illnesses and it is tough having everything thrown at me at once. I just cope as best as I can and if anyone judges me for it then so be it.

It is like me not wearing my prothesis I am far more comfortable without it and am happier without it therefore I hardly wear it. If I get judged for that which I often do I turn around and say how would you feel if it happened to you?

Everyone of us is unique I am me and I stand up as me to be counted and help others.

Despite all the pain, sadness and what else life throws at me I face my fears and get on with whatever I have to do to get through life.

I am so lucky to have support and I know how much friends mean.

Best wishes

Fee

Thursday, 9 April 2009

Not been around for a while - I am radioactive

I have not been able to post on my blogs for a while.

The reason is I have been ill with one thing and another. I am currently radio-active until later tonight due to the fact I had to have a bone scan done. This came as a complete shock as on Monday morning a breast care nurse telephoned me and asked if I had ever had one. When I gave her my hospital number which I know off by heart the number of times I have been there she checked and said "you have never had a bone scan".

On Tuesday morning I received a telephone call informing me that one had been arranged for the following day (yesterday). She went into great detail about needles and from that moment on I could not take in anything else she said. The reason is I have a fear of needles. I had no idea I had this fear until I went with someone to hospital to have a baby it was while they were cross matching her blood two nurses were carrying me out of the room as when I had seen the needle I had fainted.

So now I look away or tend to cope with the situations as best as possible.

I am feeling much better now thanks to friends who have supported me through this horrid ordeal.

I haven't felt my usual self for a while now but am starting to get back on my feet.

I am so glad I have my writing which I nearly gave up on thanks to one of my illnesses virtually taking over.

I will post my positive thoughts on my other blog in a moment but that is the current update for now.

Best wishes

Fee