This is My Life

In a few months I shall hit that milestone birthday the big Six O. For nearly 40 years I have been running my own household.

For the last 4 weeks my mother has been in hospital with a broken ankle.

I know that being stuck in hospital with not much to do leaves a lot of time to over think things.

When I visited her the other day she asked me how I am coping being on my own running the house. She asks if I have enough money, am I eating enough.

On the radio a little while ago I heard the words of the great Billy Joel. He says exactly how I’m feeling.

This is my life, just leave me alone. For years I have wished that I lived alone. One day that will happen but not until my mother eventually goes into a nursing home.

In the meantime let me enjoy these weeks of living to my own timetable. I can eat what I want when I want. I can do what I want without keeping an eye on the clock (except for visiting time).

I know that no matter my age my mother will always think of me as her little girl. I know how hard it was for her when she thought she would lose me to cancer but that was 20 years ago.

All my life I have felt that my mother is disappointed in me. She says that isn’t so, but it’s how I have felt. It doesn’t help when she talks to me as though I am a child who has to be supervised at all times. I know that isn’t what she thinks.

In hospital she complains to me that the staff talk to the patients as though they are children.

I don’t know how that feels … Much!

Getting everything organised for when my mother comes home has been exhausting, especially as my energy levels are still so very low. I am enjoying being able to pretend that this is my life for a while at least.

Wendy

During my teenage years I lived with my family in the town of Tonbridge in Kent. I attended Hugh Christie Secondary school. The most famous pupil at my school was Dame Kelly Holmes (after I had left).

Today another girl from my school has been in the national news but not for a good reason. Wendy Knell was one of my class mates. I wouldn’t say we were best friends but we were friends whilst we were at school.

In my early twenties I lived in s bedsit in the nearby town of Tunbridge Wells along with the man who later became my husband and father of my children.

Unbeknown to me at the time my friend Wendy was also living in a bedsit in Tunbridge Wells. I don’t remember it being in the news at the time but at some point I learnt that Wendy had been murdered. The killer was never found.

Today though it has been announced that the man who murdered Wendy and another girl who I didn’t know has been charged. The same man has been charged with sexually assaulting the dead bodies of women in the hospital mortuary.

It won’t bring Wendy back but at least her family can now have closure.

Also in the news today Cervical Cancer in young women is much reduced since the introduction of the vaccine.

It was obviously too late for me. I had treatment for stage three cervical cancer about 8 years before the vaccine went live in UK.

I am so pleased that the majority of girls who might have developed cervical cancer are now being saved from what I went through.

Enjoy the rest of your day.

Tomorrow we are expecting a visit from a local specialist MS nurse to assess my mother’s current condition and give us help and advice to make life easier for both of us.

It’s dark down here

Over the last few months I have reluctantly come to the realisation that once again I am suffering from depression.

Depression has been part of my life on and off for the last 40 years. Most of the time I manage to keep it at bay. I try to be a cheerful happy person. Now and again I have off days. Every few years it goes beyond that.

Seeing as this has not been my first bout of depression, I am able to recognise it even though I tried so hard to reject it.

My feeling of sadness, sleeping all the time, being disheartened at everything. Even the simplest of chores are a huge effort, have gone on for too long to be ignored now.

My advice to anyone else would be go see your Dr. So why have I not done this myself? I don’t see any point in seeing a Dr this time around. They have two solutions, drugs and or therapy.

In the past I have been prescribed anti depressants. I hated the way they made me feel as though I was walking an inch off the ground. I felt like I had no control.

After taking a couple of different ones over the years I vowed not to touch them again. I understand that for many people these tablets can be helpful.

To my mind they mask the problem without getting to the bottom of it. They might make you feel able to carry on but don’t solve the reason you got depression in the first place.

Way back in my early 20s I had a severe bout of depression. So bad that I had to give up my job. I felt I couldn’t survive the next hour let alone the next day. Obviously I managed to get through it. I asked my Dr if I could have councelling instead of drugs. A councellor came to see me at home. (Once). He was changing jobs, nobody came again. Even that one session talking through my problems helped me get back on track

Because I was out of work due to my mental state I needed to sign on for unemployment benefit as it then was. I had to give my reason for being out of work. How could I say that it was my severe depression. In those days any mention of having problems with mental health were taboo. Finding a new job would be difficult in the future if I explained the gap in employment was my mental health.

Anyway further down the line and several bouts of depression later I asked for help. All my Dr could offer was for me to self refer myself for councelling. I did that but it was several months before I was even offered any sessions (by phone not even in person).

So now here I am again. I don’t want to be prescribed medication. There is no point in asking for councelling. I know the reasons (yes there are more than one) for my current depression. Neither of my most pressing problems are going to be solved by councelling.

Firstly, my health is my biggest reason. Dealing with the aftermath of my cancer treatment 20 years ago. I am only too well aware that my insides are eroding. My bladder is nolonger an issue as I am now a bag lady. Oh yes I have recently decided to name my stoma Betty. Because life isn’t great but it’s Better than it would be without Betty. I am currently going through more scans, cameras and investigations to figure out the next course of action to give me some quality of life.

I am fed up of this body which constantly lets me down. The good days are now less frequent than the bad days. I am acutely aware of how my insides feel nearly all the time. If I get up in the night to visit the bathroom, I then spend anything up to another two hours waiting for my stomach to either settle down or send me rushing back to the bathroom. This can be two or three time a night.

I have a very limited diet, not only being diabetic but also fibre intolerant. I have many windy days/nights. I get bloated. I find eating meals increasingly difficult. I’m better off picking at food.

So although I am aware that my body problems are causing me to feel so bad, there is no quick fix. Hopefully after the endoscopy I am having next week my consultant will have a better idea of what he can do for me. I am due to have my appendix out sometime in the new year.

I would imagine that any further surgery won’t be until later next year. If I’m lucky I could be in a better place this time next year.

As if that wasn’t enough I am finding living with and caring for my mother is making me depressed too.

I do love my mother, I am also grateful for a place to live. What can I say. I don’t mind picking up after her, just generally being her housemaid ( she nicknamed me Daisy). We are now starting to get into the realms of personal care. I am not made that way. Caring for my children was one thing. Caring for an adult, even my own mum is not something I care to do and she doesn’t want me to either.

I’m not sure how much is her MS and how much her declining years possibly even early onset dementia but her memory is going. Anyone seeing her for a short time wouldn’t notice but in her day to day living it is becoming more noticeable to me. I don’t know how much she has noticed.

What is really making me depressed about all this is that I feel trapped. Living with my mother is not too dissimilar to living with my alcoholic husbands. Yes there were two of them. Not at the same time obviously.

Getting my mum out of the house is extremely difficult. When I go out on my own. I can guarantee that if I’m more than a couple of hours even if she knows it will be. Like my four hour round trip to see my granddaughter for her birthday. I will get a phone call asking when I’m coming home.

Before covid I was visiting my son and his family every 6 to 8 weeks, staying overnight so I could spend time with my little grandson. Now I don’t feel confident enough to stay away overnight.

It was bad enough when I was in hospital. I was speaking to her on the phone twice a day and my ex was checking on her daily.

Since then she has become more reliant on me at night too

Although I have now been living with my mother for more that three years I don’t feel that this is my home. It is the place I live. I know that there are so many people who are worse off than me. That just makes me feel guilty for not being happy.

I try not to let it worry me, I will be ok when the time comes. My future is uncertain. This house belongs to my mother. I live here rent free. If my mother dies whilst living at home the house will be sold and divided between myself and my two brothers. That’s not such a problem, I will find somewhere to live. What I don’t know is, what I will do if she has to go into a home. The house will go towards paying for her care.

So I know that any amount of councelling is not going to sort out my problems. Only time can do that.

When will it end?

What with all my poor health of late. I just wonder what life has in store.

I have numerous friends dealing with horrific health problems. No I’m not the only one.

Then last week my gorgeous, smart, loving daughter in law had surgery last week for an ectopic pregnancy. That would be bad enough but this was the second in under a year. Making this not only a tradgedy in itself but life changing for her and her little family. She so wanted a second child.

Several months ago I learnt that my best friend from school had lung cancer. If that wasn’t bad enough her brother died of covid at the start of the year. My friend and I had lost touch for a number of years when our children were young. In those days there were no mobile phones and no internet. I found her again through Facebook about 8 years ago.

We both had busy lives and always promised we would meet up again at some point. I had moved away from the area 33 years ago. Our communication was intermittent but we were still in each others thoughts. During one of our more recent communications I had promised that providing I was well enough I would make the effort to go and see her this summer.

Unfortunately it is now too late. My dear friend passed away peacefully yesterday morning.

Why is it that the good people in this life have to suffer so much.

Was my body ever a temple?

I’m thinking obviously about the saying that your body is a temple.

This is how I thought of my body three years ago https://ladyinredagain.com/2018/01/10/my-body-is-a-temple/

Now I think my body is more like a colander. Until you plug the holes the water or in my case iron will just keep running out.

Drained

I am sad that Prince Philip died today. I was hoping he would make it to his birthday. I was on my way home from collecting my prescription when I heard the news.

I was up early this morning as I was waiting for a telephone appointment with one of the doctors at our practice. I didn’t know what time the call would be and I didn’t want to miss it.

Just before 8.30 it occurred to me that I should take my phone off silent mode. Oops, I had missed the call I was waiting for by 3 minutes. 3 minutes! Can you believe it?. I waited for the call back. Finally 2.5 hours later it came through. Now in preparation for this call I had written a letter explaining my current situation ( to save time). I addressed the envelope for the attention of the Dr phoning me on 9th April.

I had delivered the letter 2 days ago. I wrongly assumed this would be enough time to get it to the correct doctor. He hadn’t seen it so I had to explain about my cancer, pelvic radiation disease and consequent ileal conduit surgery. My current condition since the surgery. We had a good chat about it and he explained what he thought would be the best plan moving forward, he is calling this the corn flour method.

He sent the prescription through to the pharmacy. If this doesn’t work there is another route we can try.

I collected my prescription and came home. You could have knocked me over with a feather when I looked to see what I had got.

What the heck! I very nearly phoned the surgery to make sure this wasn’t a mistake.

I checked online to see if this is a suitable remedy for bile acid malabsorption. Apparently it is. I had one sachet after my lunch. I was in the loo within minutes. Ok this might just be a coincidence as it hasn’t had time to do anything. Over the next couple of hours I have been in the loo several times and my stomach is hurting. I’ve only had one dose so I shall give it a few days to see how it goes.

I’m not looking forward to the next few days if it doesn’t help as I am going to be taking my mum for her jab tomorrow and dog sitting for my ex while he has his on Sunday.

At the moment I am feeling drained and want to curl up and sleep.

It’s my birthday on Sunday but I’m looking forward to Tuesday when if all goes well I shall get to see my family.

Today I am grateful

I feel as though I have been moaning about my lot in life quite a lot lately. So I have decided to think about the things I am grateful for.

  1. My family
  2. I will soon be able to spend time with my family again.
  3. Sunshine
  4. Having a garden
  5. The ability to bring life into our garden
  6. The wildlife that I get to see from my armchair
  7. Living near to various beaches
  8. Avon – my sanity
  9. Knitting
  10. Reading
  11. Technology – video calls
  12. Technology – research and talk to others with my health issues
  13. A roof over my head
  14. Enough food to eat (even with an unconventional diet).
  15. Being single
  16. Friends
  17. Independence
  18. Sense of humour
  19. Love of colour
  20. BEING ALIVE

Being absent in my own life

The last week has kind of passed me by. I feel like I have gone back to the first few months after my surgery. All I have wanted to do is read or sleep. I’ve been falling asleep 3 or 4 times every day. That’s not normal even for me.

I have been doing other things like a spot of gardening and a bit of avon. I have even gained a few new customers.

I have made an appointment to have a telephone call from my dr. I managed to get the earliest appointment Friday 9th April, after I was told I could ring up at 8am each morning to see if there are any available appointments that day. Whilst this is causing me a great deal of stress it isn’t urgent urgent. I have been dealing with this problem for 20 years but it is getting worse.

In the last few years prior to my surgery I was experiencing constant leakage because my bladder had deteriorated. This was very unpleasant and inconvenient but I didn’t feel unwell with it apart from the frequent kidney infections.

However my bowel problems are making me feel drained, uncomfortable and unable to do very much. Just moving around can trigger an “accident” . I have very little and sometimes no notice at all that I need to go.

Throughout the 20 years since I underwent radical radiotherapy for my stage three cervical cancer. (I know I’m lucky to be alive). I have tried to carry on with my life. This last week I feel as though I have withdrawn from my life.

Although I am my mother’s carer she is worried about me. I don’t want her to worry. Apart from not wanting her to worry I don’t think I can cope with her trying to diagnose my problems and come up with remedies.

I want to be my usual cheerful persona. I think when I see people I manage to carry that off but I spend so much time with just my mother I am sinking into myself.

Today I plan to pick up the last of my march Avon books and do a little more gardening. I hope my body allows me to do these things today.

Square peg round hole

I know the saying that you can’t get a square peg into a round hole. I don’t think I have ever been a square peg. I think I am more of a star shaped peg. (is there another name for star shape?)

I have good days, not so good days and bad days. The last few days have been in the second category but today has been bad. I have spent most of the day either asleep or rushing to the loo. My stomach has been rumbling violently since I had my breakfast.

This evening I tried to do an econsult through my drs online site. After answering a multitude of questions it told me that I needed to either call 111 as an emergency or speak directly to my dr. I shall take the second option. My current problems are not an emergency. I have been living with this condition for 20 years it has steadily been getting worse. The last 6 months since my surgery have exacerbated my condition.

I can’t remember what I was completing an econsult for the last time but on that occasion they couldn’t help me, I was advised to speak to my dr. My health conditions don’t fit the boxes.

No antibiotics for me

I have just ordered my latest repeat prescription through the online site linked to my Drs surgery. At the top of the side bar on the website was a tab for antibiotics. I am glad to say that I have not had any antibiotics since my initial recovery from my surgery. During 2019 and 2020 I was on antibiotics so many times that I started a diary specifically for my antibiotic courses. This time last year I had been on 5 courses since the start of the year.

Because of the problems I was experiencing I was getting numerous kidney infections. It became a vicious circle that ultimately prevented me having my surgery in March 2020. My PRD (pelvic radiation disease) was destroying my bladder. This meant that I was prone to kidney infections. These infections affected my iron levels. The longer I waited for surgery the more infections I got, leading to lower and lower iron levels which in turn rendered me unsuitable for surgery at that time.

In order to get my iron levels to a suitable level I needed an iron infusion. (Iron tablets would take too long and not be as efficient). However Lockdown came along and prevented my infusion from going ahead. (I was already at the hospital being prepared for this treatment when it was cancelled.) I later began a course of iron tablets which over the following months did indeed increase my iron levels. (Not fully but enough).

At the time of my surgery I was again very unwell with a kidney infection. Along with the frequent infections I had over the last four or five years I had several that were so bad I was house bound for weeks/months. The first time I was ill for four months whilst I went through a variety of tests and scans to check that my cancer hadn’t returned. The second time it happened it was only six weeks before I was strong enough to leave the house. This last time it began three weeks before my surgery, I was still very weak from the infection as well as the surgery when I came home from hospital.

I am so relieved that my surgery although dreaded at the time has hopefully put an end to these kidney infections. No more antibiotics (at least not for kidney infections) is a blessing. No more having to deal with side effects like a horrid taste in my mouth for a week at a time or having to work out what I can or can’t eat when because I can’t have milk products within 2 hours either before or after taking the tablets. For now at least I am free from that life.