Living with chronic ill health.

Living with chronic ill health is hard.

It can sap what little energy you have, making even the smallest tasks like getting dressed or making a cuppa seem like a monumental effort.

A good nights sleep is often elusive, leaving you constantly tired.

It means your quality of life is very low, you have no desire ( or energy) to do the things that you once enjoyed.

If you have a recognised illness like MS, MND or even cancer, friends & family may try to understand your issues and the limitations they place on your day to day functioning but when your issues are more related to previous health problems and are long term side effects that vary but end up merging into a huge life changing complaint peoples reactions can be a lot less understanding.

I am living with several long term health issues, mostly arising from my cancer diagnosis/treatment back in 2009/10.

Each on their own is often hard to deal with but over the years the issues have got worse & some have spawned their own subsequent health issues resulting in me being a "complex case".

It can sometimes seem like being a hyperchondriac especially when you make a list and see it all there infront of your eyes.

I don't expect any sympathy from anyone. I just wish I could turn the clock back 14 years and refuse the cancer treatment that is the reason for most of my health issues. 

I know some people find that hard to accept but its my life that has been ruined. I have nothing to live for & haven't had for many years.

My mental health is bad, I now have crippling anxiety. Even if I could get out and about I wouldn't really want to so whats the point?

People say that talking helps but it doesn't for me. All talking does is remind me of the life I've lost.

I don't really know why I've written this blog post to be honest. I just feel the need to spew out the anger & resentment I have inside me. 

I feel like no-one understands what I am going through and even though I have repeatedly asked for help & support, I get none.

If you've got this far, then thank you for taking the time to read this.

Reflections on a wasted life!

In a couple of weeks time it will be my 60th Birthday.

Getting older doesn't bother me; it never has. It's just a number, after all.

What does bother me, is simply that I have done nothing with my 60 years on this planet.

I have simply existed for all these years, day after day, week after week, year after year.

I have nothing to look back on; well nothing worth looking back on.

The cancer diagnosis in 2009 that has left me with an almost zero quality of life for the past 13+ years is nothing to smile about.

I often think back to when I was 16 and about to leave school. That transition time when you go from being a schoolchild to being an adult and venturing out in the big wide world.

It was a scary time. Being expected to act like you were grown up but still feeling like a child.

It was bad enough then but I'd hate to be a 16 year old now with all the added pressure that there is around.

The thought of leaving school and going out into the big wide world was very scary. Being expected to be responsible with money, get a job etc.

I decided to enrol in college as a sort of halfway step so I did 2 years at catering college and felt a bit more mature when I left there at 18 and then entered the big wide world.

Looking back, I don't think I ever really had any ideas what I wanted to do with my life. I came from a family where it was kind of expected that, as a female, you'd just get married and have kids. There was never any talk about planning for the future or expectations of going to university or having a career.

I did want to travel though and see the world but that never happened. 

Instead, I left home at 19 and married at 20.

So as I reflect on the past 60 years, it is done so with an awful lot of regret & sadness.

I have done nothing of any major worth; I don't feel like I have accomplished anything of any significance.

I have just existed; one day after the other.

I don't normally believe in having regrets but in this instance I do regret not living my life more fully.

No-one is to blame, its just circumstances that led to other circumstances.

Now, its too late to change things.

They say that there is only one thing that is certain in life - and that is that one day you will die.

I don't fear that day at all.

When you can't prove who you really are.

Hello again, it's been a while since I last posted but things have been a bit hectic here lately.

I try to do regular scans on my laptop but over recent months it has slipped my mind somewhat however towards the end of last month I sat down early one Sunday morning with a mug of hot coffee & logged on. I set the scan in motion and when it had done I logged onto my emails and checked through them and then went to log into FB.

Thats when the problems started. 

I have 2 step verification set up (which I am told gives you that extra bit of security against scammers etc.) so this entailed FB texting me a code that I needed to enter in order to log into my account. After 5 minutes, there had been no text!!

Now you need to know that my mobile is a very basic one. It does text messages & calls; it is pay as you go; has no camera or internet connection & cost me £8. It is there for emergencies and is rarely used other than for getting text messages from FB or paypal with verification texts!!!

So, no text from FB with this all important verification code. I check the phone, battery  is charged, signal looks ok but just to be on the safe side I walk around the room, into the hallway and even out of the front door into the garden as we sometimes have signal interuptions here on our little scottish island.

Still no text message from FB. So I decide to call our home phone from the mobile. I get a message appear on the phone saying "emergency calls" only.

You may probably guess by now that I am not very techy at all. Infact I really hate technology and the way it controls our lives (but thats a whole other blog post!!)

Anyway, I decide to log onto the vodafone website & see if I can "chat" to an adviser. Turns out they use a chatbot who keeps telling me that they don't understand my question so I type "Can I speak to a human please?"

A couple of minutes later I am "talking" to Haania who, after taking me details asks me for the 1st 2 and last 2 letters of my memorable name!!!

Oh come on, you are talking to someone who can't remember what day of the week it is let alone what memorable name I used when I set up an account 15 years ago!!!!

After giving me a few prompts I finally manage to dig back into the depths of my memory and provide the correct letters.

Now, as I said earlier, my mobile is only for emergencies and rarely gets used. The last time it was topped up was with £10 when I went into hospital in Oct. 2020 and there was probably around £6 of that credit left so it came as no real surprise when the lovely Haania told me that my number had been deactivated due to not having been used for the previous 180 days!!

She said she would arrange for a new SIM card to be sent to me which would solve all my problems apparently. 

I asked if I could keep my old number and explained that it was registered with FB and other accounts and she said she needed to speak to her superviser about it and would be back in a couple of minutes.

This was my cue to dash to the loo as I was desperate after drinking a huge mug of coffee. I came back to find her typing a reply.

Her supervisor had said that when the new SIM card arrived I should log on to activate it and then they would arrange for me to transfer back to my old number.

OK, that seemed reasonable. I could go a few days without being able to log into FB.

The new SIM arrived 5 days later due to the Bank Holiday and I went back on the vodafone website to activate it only to be told by another person that it was not possible to swap back to my old number and that I should not have been told that I could and he was going to report Haania for telling me that I could.

I felt awful for the poor woman, despite me not being able to get into my FB account.

Vikram told me that old numbers go to be "recycled" & "cleaned" of all data and are then re-issued but he said he would double check to see if my old number was still available. 

Sadly it was not, and I also discovered that my unused credit had been wiped too along with all my saved messages & contacts as he said the old SIM had been wiped too so I had to put £10 credit on the new number and start all over again.

So, I had sorted out the phone issue but I was still not able to log into my FB account.

I tried to contact FB but it seems that you need to log in in order to do that so I tried to find an email address to contact them but every email I had from them had a "no reply" address so I tried reaching out to them via DM's on Twitter & Instagram but got no response.

According to FB, if you have 2 step verification and can't access your account or receive the code via text you can submit 2 documents that verify your idendity.

Thats when I hit the next problem. It says that the documents need to be in the name that appears on the FB account.

I am known to most people as Kaz but my real birth name is Karen and that is the one that is used for all offical stuff like GP records, utility bills (although most of them are done online) etc. I also do not have a driving licence or a valid passport (the old one expired over 15 years ago). They also wanted at least one document with date of birth on. 

Well, the ony document with my date of birth on is my birth certificate but that has my full maiden name on!!

Eventually after many swear words and lots of tears of stress I found a couple of documents that I thought would be enough. We currently did not have a working scanner so I had to take photos of them and upload them only to discover that FB would not accept them.

So I ended up having to order a new all in one printer which took 3 days to arrive!!

We are now up to Friday 12th May. The new printer has arrived, has all been set up (cue more swear words, broken nails & endless cups of coffee to keep me sane!!)

Documents are scanned, submitted and provisionally accepted. I get a message onscreen to say I will hear from FB in around 48 hours.

6pm on Sunday 14th I get an email saying that 1 of the documents was not suitable (but they don't say which one) and I should submit again. It's also a "no reply" email so I have no way of finding out which document is not suitable.

It is now over 2 weeks since I lost access to my FB account. Its not just my personal account that is at stake here. I run several pages including my womb cancer support organisation page - none of which I can access.

I have precious photos of my Mom on FB, messages from friends who have passed away and 15 years worth of memories. It's how I connect with friends & family.

There has been a lot in the news over recent weeks about people here in UK not being allowed to vote because of new rules bought in that require valid photo id of voters in order for them to exercise their democratic right to be able to vote.

This morning I have submitted more documents to FB in the hope that they will be accepted & I can gain access once again to my account.

If I do get back in, the first thing I will need to do is update my mobile phone details otherwise we'll be back to square one.

I hate technology.

UPDATE - I finally got back into my FB account on 19th May. 😃

 

Britain in 2022

 There is no doubt that here in UK, as in many other parts of the world, we live in a very unequal society.

Yesterday the death was announced of the Queen, aged 96. She died in one of her many homes, surrounded by her family. She lived a long & happy life.

The vast outpouring of grief being shown by many across MSM, TV & social media is way beyond even what it was when Diana died in 1997.

The Queen was a woman that very few of us would have ever met or had any dealings with. The nearest most people got to her was probably licking the back of a postage stamp.

It is possible to express condolence at her passing without all the public displays of mourning that is going on.

Yes, she was a Mother, Grandmother & Greatgrandmother and will of course be missed by her family but the world should not grind to a halt because of her death.

There are many who see the monarchy as an outdated institution and we could go into the old arguments of them being good for tourism etc but we have surely moved beyond that by now.

Scandal after scandal; members of the royal family seemingly above the rule of law or totally oblivious to how ordinary people live. 

They live their life surrounded by the best of everything whilst ordinary people struggle to heat their homes, feed their children or keep a roof over their heads.

Is this really the kind of society that we want to live in, in the 21st century?

Many believe that the monarchy is outdated and should be consigned to the history books like bear baiting, child labour and throwing people in the Tower of London & then beheading them.

The UK is probably as divided now as it ever has been. 

Estimates reckon that over 227,000 people in UK are homeless - either sleeping on the streets or in temporary B&B accomodation.

Nearly 6.73 million people are waiting for NHS treatment with over 355,000 waiting for over a year.

There are over 4.3 million children living in poverty in UK; thats 30% of all children.

We are currently going through a cost of living crisis which sees many thousands of people worrying about how they will pay their fuel bills and its not even winter yet. 

Spending time analysing who or what is to blame does not solve the problem that many are facing, and many will undoubtedly die this winter but as with covid, many of those in power seem to think its ok to "let the bodies pile high" with around 210,000 casualties of the pandemic so far.

The world does not stop because one woman has died. People are still dying around the world due to wars, famine, floods, climate change etc.

People are still sleeping on the streets; unable to heat their homes or access vital medical treatment.

Around 1,680 people died yesterday, of which the Queen was only one.

For every family that lost a loved one, it will have been an upsetting time and they will all need time to grieve.

Today, another 1,680 or so people will die and so again tomorrow and each day forward.

It is possible to be respectful and also say that the death of one person is no more tragic than any other.

In the grand scheme of things, death is the only certainty we have and no-one however priviledged or rich they may be, can escape that inevitability.   

 

Christmas & the cost of Living Crisis.

 As the cost of living crisis is really starting to bite for many, many people I've been thinking about just how hard Christmas will be for many families.

It's a tough time for many any year but this year is going to be especially hard for so many people.

How do you explain to young children that there won't be the usual amount of presents under the Xmas tree this year? How you you tell them that you have to make the choice between heating the house, putting food on the table or buying presents?

Many families rely on foodbanks & other small charities especially at Christmas time but the cost of living crisis is also affecting these places as donations drop and high energy costs are giving many no choice but to close their doors.

It is definetly going to be a bleak mid-winter.

So, we know what the problem is and although we are not politicians and can't solve the many & varied issues that are causing all this there must be something that we can do to help allieviate, even if only for one day, the anguish, dispair and distress that many people are feeling.

If you can, please support your local foodbank. They need essentials every day of the week (tbags, sugar, tinned stuff, toiletires etc) but in the few weeks before Xmas some little extras would really be welcome. Maybe biscuits, sweeties for the kids, tinned fruit, selection boxes etc. Just because people are poor doesn't mean that they can't enjoy a few little luxuries now and again.

Far too many people judge others when they see them with a mobile phone or driving a car without stopping the think that they may have had that phone for years or they live somewhere with no reliable public transport. 

Life is complex enough without others judging you for the way you live. 

If you have kids maybe have a sort through their old toys and see if there is anything in good condition that could be donated. Many foodbanks double up as a kind of Xmas gift bank too so are always looking for items that can be re-gifted. 

If you have a foodbank near you why not pop in and have a word with them. Find out what they are planning to do for Christmas and see how you can help. 

It somehow feels wrong to be thinking like this and its not in any way meant to be patronising - I'm in a similar position myself and have been in a much worse situation in years gone by so I know only too well how hard it is. Going to bed in my coat & gloves with 2 pairs of socks and a hot water bottle & having to scrape the thick ice of the windows because we couldn't afford to buy coal so had no heat or hot water.

Things have improved a bit thankfully for us but we will still struggle this winter although not as much as many people will.

We need to remember that many small businesses will also be struggling due to the cost of living crisis. All their costs will have increased and many will be having to pass on at least some of those costs to customers, knowing full well that its a tricky situation for everyone. Increase prices too much and customers will not buy; not increase prices and risk going under.

Sorry if this blog post seems a bit erratic but I'm just putting my thoughts down in written form and its such a complex issue and one that needs a multi pronged approach to resolve that my mind is all over the place.

I feel the need to do something - but what? I know many other feel the same way. Reading through my twitter feed I see so many like minded people who are trying to figure out how, not only they can deal with the crisis themselves but how they can help others who are less fortunate than them.

I don't have spare cash to spend but there has to be other ways to help people.

I you have any suggestions then please feel free to comment below or start your own thread on social media.  

Maybe we need an appropriate hashtag that we can rally round - any suggestions?

I'm going to end this here as I've rambled on enough for now. Need to sit and thing about what to do next.

Thanks for reading this and if you feel the same as I do, thank you for caring.

Until next time.

To Jubilee or Not.

 I am old enough to remember the silver jubilee celebrations in 1977. I would have been almost 14 years old. Can't say I was much bothered about it all then but I'm certainly well bothered about it now.

Considering the state that we find ourselves in at the moment here in UK, what with all the post covid issues and the cost of living crisis, I find it totally shameful and deplorable that so much money is being spent on this when apparently we can't afford other more necessary things like making sure our hospitals can function properly or our schools are in a fit state in which to educate our children.

Today, 2nd June 2022, marks 70 years since the current Queens coronation. The state that our country is in now is nothing to be proud of. 

We have thousands of people living on the streets; a broken healthcare system; a cost of living crisis so severe that even people who are working are really struggling to survive whilst those who rely on pensions or benefits are having to make the choice between heating their homes or putting food on the table. Our school infrastructures are crumbling and many children around the UK are being taught in buildings that are old, unheated and even unsafe. Our health and social care system is broken with over 1.2 million people not getting the care they need. Our public transport system is broken due to severe underfunding for years and lets not forget the current energy crisis, with the news recently that up to 6m homes could face powercuts this winter.

With all this and more, many people are asking exactly what is there to celebrate?

The Royal Family has a dark past that many people are more than happy to sweep under the carpet & ignore.

Let's face it, the so called "british" royal family isn't even all that british but mostly german in descent. Read more about that here 

There were also the nazi sympathies of many of the leading royals, both before, during and after WWII.

Then there are the various scandals of Charles/Diana/Camilla, the Queens sister Margaret & her affairs, the divorces of Anne & Andrew and all the other affairs & scandals that have been kept as quiet as possible to avoid potential embarrasment.

The latest in a long line of scandals is the one surrounding Andrew and his connections with the now deceased convicted sex offender Jeffrey Epstein.

All this and much, much more means that the image of the royal family has been well and truly tarnished over the years.

Support for the monarchy has fallen over recent years. Latest poll by YouGov show that only 61% support having a monarchy with 24% prefering an elected head of state. 

Which brings us to the nitty gritty of just how much all this jubilee stuff is costing and more importantly, who is paying for it?

Well, £28m is coming from the tax payer - you and me. £22m is also coming from the National Lottery too.

However, its not just the actual cost that is shocking but also that typically Bank Holidays cost the economy over £2b in lost productivity. Coming at a time when the economy is struggling to recover from the pandemic & the cost of living crisis it really does make the mind boggle. I guess the magic money tree is in full bloom in Downing Street.

Sitting here at my desk, on my laptop in my small flat on a Scottish Island I can see union flags & bunting blowing in the breeze from several houses in the street. Considering that the vast majority of this place have talked about nothing other than Independence for years I was quite surprised to see them.

There are several jubilee events happening this weekend here too apparently; guess they will all be back to waving their saltires next week rather than their union jacks.

We are almost a quarter way through the 21st century. How much longer will the UK monarchy last? Great Britain will face a change of monarch sooner rather than later - maybe now is the time we have a proper discussion and the chance to decide our future. The Queen may no longer be an absolute monarch but the institution of the monarchy is regarded by many as outdated and they want it replaced by a fully and fairly elected head of state.

Vive la Republique!!

Living with Depression

I live with depression. I have finally said it out loud. Notice I said I "live" with it rather than "suffer" with it. There is sadly enough stigma around admitting that you have depression without adding to it by saying you suffer with it; people automatically assume that you are somehow "less than" if you have any kind of disability or illness.

I was diagnosed with chronic depression just after I had finished my treatment for womb cancer in August 2010. 

Whilst waiting for an appointment at the hospital I was asked to take part in a short survey about mental health of cancer patients. I was contacted a week or so later and asked if I would like to take part in a trial being run by CRUK which was about talking therapy to help deal with the mental health issues in cancer patients.

I agreed and every 3 weeks for about 3 months I went across to the mainland and spent an hour talking about things with a very lovely male nurse.

I soon realised that I had had depression for many years, I just wasn't aware of it. Lots of things slotted into place the more we talked and it made me realise that what I thought was just me being fed up and tired all the time was actually depression.

Part of the programme was learning to spot when the feelings of depression were getting stronger and then finding coping mechanisms to deal with them.

I found the programme very useful at the time and in the years that have followed have found myself referring back to what I learnt when I've had bouts of feeling bad re-appear.

Depression can affect people differently. With some it comes & goes, with others it is permanent. What I found from the programme I did was that the more you understand your depression the easier it is to deal with it.

I have chosen not to take any medication; it was something that I felt wasn't right for me and because of that when I have mentioned that I have depression I've been told that its not really depression because I'm not on pills.

So it's something that I rarely talk about. Like I said before, it affects people in different ways and we all have our own ways of coping.

There is a saying that it's good to talk about depression and whilst that is exactly what I am doing now, it's not something that I feel will help me in dealing with my depression.

Most of my depression is due to my other health issues and the fact that I can't do all the things that I want to do. Having cancer changed my life for the worse.

On the NHS website page about clinical depression there is a quick self assessment test you can do to see if you could be depressed. I have just done it and scored 20/27.

Over the years since I first realised I had depression I have, thanks to the programme I did, been able to sense when it was coming on and used the tools I learned to help me cope. As a result, the episodes of deep depression had got less and less and I was able to cope because I could see when it was resurfacing.

During covid I ended up in hospital after having a slight heart issue and spent 2 weeks in the coronary care unit. After about 10 days I had a bit of a mini break down; unfortunately it happened on a Sunday and there was no-one working in the mental health unit over the weekend but the lovely young nurse who sat with me for 20 mins as I sobbed away said she would mention it to the ward nurse and get someone to come & see me on the Monday. It never happened.

Back home a couple of days later, I tried to get an appointment with the mental health services here on the island but was told there was a very long waiting list as there was only 1 MH nurse. I was told there was a volunteer run service here where you could talk to someone about your problems.

As I've mentioned before - I don't feel that talking is going to be of any use to me. It's not going to take away the fact that I have had cancer or that I am living with long term side effects of the threatment; it won't stop the pain & fatigue or the sleepless nights; it won't stop me being diabetic and having bowel problems which mean I can't get to the loo in time and end up messing myself frequently.

It won't stop the fact that I wake up every morning feeling sad that I have woken up and have to go through yet another day of living like this.

I'm not suicidal, far from it. But I go to bed every night hoping that this will be the night that I go to sleep and don't wake up.

Occasionally I have posted on social media about the way I feel; not the deep, dark, blackness of it but the more general side of living with long term health issues and whilst many who reply are well meaning, the "hope you feel better soon" or the "have you tried ...." comments can be hard to take especially when you know that you are not telling them the whole truth about just how bad things are.

I know there are quite a few of my FB friends who have depression and they deal with it in their own way, as I do with mine. Sometimes though it would be nice to have someone just listen and say "I hear you". That's all I want. 

I don't want anyone to "fix" me or offer advice on what I should do - go for a walk, loose some weight, get some exercise, blah, blah, blah.

I've been told I moan about things too much. That I should be thankful that I don't have cancer anymore. That I'm always talking about my problems - whatever happened to "it's good to talk" eh!!

It is good that there is a lot more awareness around mental health issues and they are being talked about a lot more but there is still a very long way to go. Mental health issues with men is still somewhat of a taboo subject though there are many good initiatives out there helping to break the stigma.

However when you have people in the public eye who seem to take delight in mocking others who are open about their struggles with depression then you have to wonder if we have come very far at all.

Well, if you are still reading this then thank you for staying with me.

You may not agree with my point of view but that's ok, it's my life, my issues and my way of dealing with them. All I ask is for a little understanding, which is something you have from me if you are going through something similar.