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.

The domino effect

It feels to me that I am experiencing the domino effect. Each domino that falls knocks the next which then leads to the next.

Dominoes

Each time I have any serious health issues I get radical treatment which cures the problem.

Unfortunately that treatment leads to another serious problem. That then gets treated but then leads to the next problem.

I am currently waiting for a date to have an endoscopy to rule out cancer. I’m feeling a bit anxious if truth be told.

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.

Is it hot in here?

Women of a certain age suffer from hot flushes. In theory this shouldn’t be a problem for me. I kind of went through an early menopause when I was a mere 39. I had hormone therapy at the time so I think all in all I got away lightly. For many years after this I was always warmer than everyone else. Prior to my cancer treatment I always felt the cold. Then suddenly I was in shorts and a t-shirt when everyone else was in jeans and jumpers. My palms were sweaty. I would say that I had an internal heating system after my radiotherapy. Over the years I came across other cancer survivors who also experienced this feeling of being hotter than everyone else.

I couldn’t stand to have hot feet so rarely wore socks even in winter. I would get into a panic if my feet or even my hands became overheated. My work colleagues would ask me weren’t my feet cold when I was wandering around in sandals and bare feet. Then gradually over the last few years that over heating wore off. I started to feel the cold again. Get this I have even started wearing socks everyday unless the weather is hot.

In the last few months I have found myself taking my jumper/cardigan off at various times through out the day. By mid evening I am beside myself tearing off my outer layer if clothing. Then comes bed time. I am so so glad that I sleep alone these days. Who would want to share a bed with me right now. Only a mad man! One minute I’m under the duvet, then I have to stick one leg out (something I have done for years). That doesn’t work my body is in panic mode so I have to completely remove the duvet. My shoulders get cold so I pull the duvet back but my legs are still hot. My head is sweating. Even though its winter I am putting on my desk fan to cool me down. I have a cool pad for my head. Boy that thing is cold but after a while even that becomes warm. All night I am duvet on duvet off, fan on fan off. Cool pad under my head, cool pad removed.

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A few weeks ago it occurred to me that this situation has been worse in the last six months. In the middle of the night when I was having a difficult time I posed the question to the appropriate facebook group I belong to for other ladies in my situation. The answers came flooding back, yes this is a side effect of the surgery I had back in the summer. From what I can gather, this goes on and on and on for years. The surgery has caused a hormone imbalance. As if I didn’t have enough to contend with.

Girls are doing it for themselves

This is a topic that I am passionate about but I am really in two minds about this item that was on the news this morning.

Researchers at Queen Mary University of London have developed a home smear DIY kit for cervical cancer tests. The kit allows women to take a vaginal swab or urine sample at home and send it into a lab, where it will be tested for chemical changes. The NHS aims to get around 80% of women tested, but last year only 70% of people attended their cervical cancer smear tests last year.

If successful the kits will be available in three years time.

I have been very passionate over the years

You may or may not be aware that in early 2001 I was diagnosed with stage III cervical cancer. I was very conscientious about always having a smear/pap test whenever I was called for it. In those days in UK that would be every 5 years. It was also routine to have a smear test during a 6 week post natal check up. My youngest son was born in December 1995. I had my post natal examination in January 1996. I was then due for my next test in January 2001. In April 2000 I began to have bladder leakage. I was reluctant to go to the doctor about this. After several months of this (I blame Tena Lady adverts for the idea that it is normal for women to develope leakage). Finally in late 2000 I had an appointment with our doctor who referred me to see a Urologist at our local hospital.

I had my appointment but was told that he couldn’t examine me properly as there was a blockage. A week later I saw a Gynaecologist who also attempted to examine me. He attempted to perform a smear test. This didn’t work as I was bleeding to much. Next I attended day surgery for a biopsy. Weeks later (9th March 2001) I never forget that date. I was given the news that I had a tumour the size of an orange. I later discovered that it was 7cm x 8cm x7cm. I was too large to be removed by surgery.

The next few weeks were take up with a variety of tests and measurements and 3 tattoo dots on my back ( for radiotherapy purposes). The treatment I received over the following months did the trick. The tumour dissolved and in September 2001 I was given the all clear. The treatment I received saved my life. I am very grateful that I went through it but it is not something I would want anyone to go through if it could be avoided. I know without a doubt that if I didn’t have treatment when I did I wouldn’t have made it to the end of 2001. For me now every day, month and year are a bonus.

If at that time smear tests had been performed more frequently, it’s probable that my cancer would have been picked up sooner and treatment less invasive.

Over the years I have come across or heard of women who don’t go for their smear test. It’s free! It takes a couple of minutes. It’s a life saver. It’s a no brainer. I get very cross when women say they don’t go, it might be a question of dignity or vanity. It might be because they are scared. It could be the thought that it was uncomfortable or even hurt. Let me tell you that whichever the reason, its a darn sight worse to go through the treatment for cancer.

Back to the news segment this morning. It is being proposed that it in a few years time if trials are successful women will be able to do the tests themselves. On the one hand if this will encourage more women to go through the process that has to be a good thing. On the other hand are these kits going to be fool proof. I know that nurses and doctors are not always 100% able to get the right samples. Yes I do understand that these kits are to be more about getting a swab rather than gathering cells but is it going to be accurate enough and not give a false sense of security.

I’m not like them

I have often been told that I come from a long line of strong women. I am told that I am a strong woman too. I have memories of my Great Grandmother Alice but only as a very old woman. I have memories of my paternal Great Gran (mostly of having to stay with her and being fed undercooked eggs for breakfast). I understand that both these women were strong willed women in their day.

I obviously have memories of both my Granny and my Grandmother. My Granny was one of my favourite people in the world. I can’t in all honesty say that I knew a great deal about her life but I loved her dearly. She was taken away from us far too soon, She had a massive heart attack in the night when she was just 67. My Grandmother was a lady who I wasn’t so close to when I was growing up. I grew closer to her in her later years. How many women in their 90s complete a degree with the Open University.

My own mother has always been strong. My father wasn’t inclined/able to support us properly so my mother trained (whilst bringing up 3 teenagers) to become a Lawyer. Life wasn’t easy for my mother when we were small. She did what she could to make a better life for all of us.

During my adult life I have been reminded by my mother that we are strong women. I have been told by others that I am so strong. I struggled to bring up 4 boys whilst being married to an alcoholic. I survived stage 3 cancer in my late 30s. I fought to get through a nasty divorce. I managed to keep myself and 4 boys going through financial struggles following my divorce. Then I remarried and found myself hitched to another alcoholic who was also a narcissist. I managed to get out of that situation.

All my life I have been reminded that I am strong and come from a line of strong women. I’m not though. I have never felt strong. I have done what I had to do for my boys. I have always felt that I have to get through everything because I come from a line of strong women. I can’t let the side down and be the first non strong woman.

I want to be allowed not to be strong. I want to not have the responsibility of keeping up with my strong women.

WHY do I have to always be strong?