Lots to think about

I had asked for this a few weeks ago and today was the day. Two very pleasant young women (young to us) came to see us. They asked lots of questions and answered our questions.

Caring for my mother who has Multiple Sclerosis has become gradually more challenging. Having talked to these two specialist nurses we now know where we are at with this progressive condition.

It takes two of us to get mum in and out of the car. They suggested that we forget about taking her anywhere in the car. This doesn’t mean that she will never leave the house again. Instead I need to apply to our local council for taxi vouchers. For hospital visits etc we need to call a wheelchair accessible taxi so that she can leave the house in her wheelchair and stay in it from start to end.

She can also go to exercise classes run by MS society so that she can meet with others in the same boat and give me some alone time. We can get dial a ride to collect her and bring her back.

Then there is the question of getting her in and out of bed. The time is fast approaching for us to engage a carer to come in each morning to assist her with getting up washed and dressed. We both knew this was inevitable but being told that the time has come is kind of a weight off my shoulders deciding when and how to do this

There is also the decision that it’s time to think about moving her bed downstairs. When we do this I will move my things out of the dining room up to the bedroom.

We discuss other things to make life easier for both of us but that’s enough for today.

I feel as though a weight has been lifted off my shoulders but at the same time a feeling of deflation.

We have both been in reflective mood today with random thoughts about it all being spoken.

Mother had said that she now has to accept that her life has changed. She needs to go with it rather than fighting it.

How have I come to this?

This afternoon I need to drive to the other side of Southampton for a covid test. I haven’t been that way for years. I know the way to where I need to be. It is only 20 miles each way.

There are roadworks most of the way from here to there. Those who think they know best are turning our motorway into a “smart motorway”. The rest of us think it’s a waste of time energy and money not to mention unsafe. I am going to give myself an hour to get there just in case of delays.

Even just a few years ago I would have thought nothing of doing this journey. I enjoyed driving and often made journeys of several hundred miles. Now I am feeling anxious about it.

When did I change. Has my joy of driving stopped suddenly or has it crept up on me slowly?

Since having this new car I have only stayed local. Maybe going a bit further today will help. I have been driving automatic cars for a few years but this one is manual. I had forgotten how often you have to change gear when driving around town. Perhaps driving along the motorway will help. Either way it isn’t going to stop me going to other places when required, it just might need more mental preparation.

Happy Easter

It’s Easter Sunday. There is a small amount of chocolate in the house. Mother got me a pouch of maltesers and I got her a chocolate rabbit.

This morning I had a video call with my grandson who actually managed to talk to me. Usually I talk to his daddy whilst he plays with his toys or watches his cartoons. Hopefully if nothing changes we should get a chance to see them in person next week. I have his birthday present here ready to be wrapped. He will be three in a few weeks time.

I also tried to video call my granddaughter. Hopefully later I shall get through. I think her daddy must have been driving when I was calling. I have seen a photo of her and her cousin at the beach with their parents.

I have done more gardening. Planting seeds in pots. They are the sun at the moment in the hope of giving them some warmth. I shall bring them inside later as temperatures are due to plummet.

Yesterday I went to the car sales where my potential new car is. Due to covid restrictions I wasn’t able to examine it but I could look through the windows. We have arranged to talk to the sales man on Wednesday to go ahead with the deal.

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.

Is resistance possible?

I am doing my best to resist. On days like this I feel my residence slipping. I took myself out into the fresh air and sunshine to do some deliveries. That helped to lift my spirits.

This morning I swear that we were having a competition to see which of us could be the grumpier.

My life seems to have been one long struggle from beginning until now. My struggles have been many and varied but through it all I have tried to stay optimistic. I try to be cheerful and bring a smile whenever I can. This is why I must resist the temptation to become a grumpy old woman.

I have always loved my mother very much, we have always been very close. Since moving in with her 3 years ago I have found that she is fast becoming a grumpy woman. I can understand that she is unhappy. Not only is she aging faster than she would like. Although it is over 30 years since she was diagnosed with MS for most of those years most people wouldn’t know she had it. In recent years her condition has deteriorated. In the last two years she has had to give up driving. She is angry that her condition has taken away her independence.

I do my best to overlook her grumpiness. Recently she said she has nothing to laugh about these days. I reminded her that I’m here and she can laugh at me.

It is a fine line knowing when to let her struggle to do things and when to take over. Most of the time I just want to say “let me do it!” I usually let her try to do whatever it is then after a while ask if she wants help. She is a very proud, stubborn woman.

Most of her grumpiness is not aimed at me but at the tv. I think this is what gets me down the most. It is just constant. What people wear, their hair, what they say. Bad grammar annoys me but it annoys her more and she is constantly saying so. The worst is adverts. It doesn’t matter how many times she says it, the advert isn’t going to change.

I try to ignore it but I’m finding its starting to make me grumpy too. I don’t like that my mum is becoming so grumpy and I don’t like that it is making me feel grumpy too.

I must do everything I can to resist becoming a grumpy old woman before my time.

It’s Friday

It hasn’t been a great week for me. I wanted to get my new Avon books out ready so I could put my first order of the month on early. I would normally pick up my first batch of books and hopefully orders on or around the first of the month. This month is different. In their infinite wisdom Avon decided to send out the march bonus books with the April brochures.

Now I don’t want my customers to miss out on the fantastic deals in the bonus book so I have been waiting for them to arrive so that I can get both books out together. They arrived this afternoon.

In previous month’s I would have picked up one batch of books on Monday then put out another lot to pick up today. My next lot would have gone out today for pick up next Monday and so on. This month however my first batch are only going out today. To make up for missing a week I shall have to put out and collect more books each time.

Although I am now recovered from my surgery I do still get very tired easily. I shall see what I can do.

As it is I have not been feeling great for several days so in a way I have been relieved that I wasn’t going out but that’s beside the point.

So today I have done deliveries. Come home to be here when my books arrived. Slotted them into the packs I had already made up. I have put out half of today’s books. Later I shall do a few more deliveries and put out a few more books. I know my customers will be happy with the 5 for £5 deals we have.

If you are in UK and would like to see these deals https://online.shopwithmyrep.co.uk/?rep_id=rep4563924386143

Earlier I was surprised to see a mistle thrush in the garden. I’ve not seen one here before.

Mr Blue Sky

The sun has been out today and the sky has been oh so blue. Apparently many have rushed to the beaches and parks to make the most of this lovely day. Out on my rounds delivering to my Avon customers I saw many people working on their gardens.

Every time I think about how blue the sky has been. (Not now the light is fading and it will soon be dark.) I consider bursting out into song. One particular song, yes you guessed it Mr Blue Sky by ELO. There was a time when my youngest son was but a boy this was one of his favourite songs.

I have refrained from singing. I don’t sing very often these days. Sometimes when I am listening to music through my earphones I just can’t resist singing along, much to my mother’s amusement. She wouldn’t be so amused if I burst into full song. I used to love singing at the top of my voice when driving along the motor way, windows open radio turned up high. I don’t do this anymore mainly because I no longer have a daily drive along the motorway to and from work.

I used to sing a lot in my car. I kind of but not really feel sorry for the lads who I would take to football training and matches along with my own sons. The rule was if you are in my car, you have no choice but to put up with my singing. Singing made me happy. Singing helped me to get over headaches. My second husband played guitar and was in a band in his younger days. He was passionate about music but I never ever heard him sing. He found it amusing that I sang. He even said that now and again I was even in tune!

On the one hand I would say that I am tone deaf so singing wasn’t one of my talents. On the other hand I have often said that I am very good at singing the only problem is that other people don’t have the ability to hear it properly.

Who has a talent that others don’t appreciate and what is it?

Now and then

Now that I have got back into blogging I have decided to create a new blog to promote my Avon business. It’s currently in the pre launch stage of setting up. Taking a break I went back to my very oldest blogs to have a read through some old posts. It was interesting remembering or not some of the things I had written. I wrote those blogs during the years between my two marriages. There are posts about my life as a single mum to four teenaged boys. There are posts about my life as a single woman. There are quite a few of my attempts at creative writing.

What struck me was the feel of optimism, a love of life. I didn’t have much. Each month was a series of struggles but I was happy in my own way. I was free to be me. I was free to go where I wished (so long as I could afford to). I could have friends.

These days I don’t have immediate money worries. I am able to treat my sons and their families in ways that I couldn’t in years gone by. I am happy sitting with my laptop, knitting, reading, watching our wildlife. I don’t have the same freedom. I’m single (separated for 3 years). I don’t feel any great desire to meet anyone new but that doesn’t mean I have given up on romance. (maybe one day). I can’t just get up and go. I live with and care for my mother who in her late 70s is disabled. She has MS which for many many years didn’t affect her mobility but in the last few years has rendered her housebound. I have to make sure she is ok before I can go anywhere, keeping an eye on the time.

Six months ago I underwent major surgery, I was terrified before hand but now even though it was life changing I feel so much better than I had done for several years.

I should be feeling positive and anxious to get on with the rest of my life but I feel as though I have lost my sparkle. My zest for life has got up and gone. As my health improves I am determined to make the best of life and continue to make sure I actually do have a life instead of being buried in the life of being a carer.

The highlights of my life are watching my family grow. Seeing my two grandchilden develope their own personalities. I do miss them all as they all live at a distance from here.

My current life is comfortable I just wish I had the zest for life that I had before.

Disconnected

Six moths ago (well almost) , it was 18th August 2020. I had life changing surgery. Lockdown the first was quite easy for me because I wasn’t going out anyway. At the start of 2020 I was waiting to have surgery in early March. By mid February I was on my 4th lot of antibiotics since the start of the year. I put myself into a self imposed isolation. I didn’t want to catch a cold or anything else that would put off my surgery.

Well that plan didn’t work. When I had my pre-op it was discovered that my iron levels were far too low for me to have my procedure. My surgeon said it was all the kidney infections that had caused my iron levels to be so low. No wonder I was getting so tired all the time. I thought taking iron tablets would help but that wasn’t the case. It was arranged that a week prior to my new surgery date (3rd April) I would have an Iron Infusion. Similar to a blood transfusion.

However on the day of the infusion I went to the hospital. Very weird, security on the door stopping everyone who wasn’t there for treatment from entering. I had already discovered that the car park I usually use was out of bounds. Hospital staff only. This was the impact of the first lockdown showing itself. Corridors were very quiet. None of the normal activity. Eventually after being sent to the wrong place I found my way to Day Surgery Unit. Here I was prepped for my treatment, all the usual questions, blood sugar test, weight, height etc. The nurse went to collect the prescription. A few minutes later returning with my surgeon’s assistant.

It took a very short while to let the news sink in. My surgery was cancelled. Covid-19 had put the kybosh on that. With tears in my eyes I drove back home. No infusion for me on that day. The rest of lockdown I was still fairly weak. I stayed home and stayed safe. I knitted, I read. I took care of my mum.

Lockdown finally came to an end, my health was slightly better, I guess because I had been staying home not rushing around everywhere. I waited for the call. I was so worried that I wouldn’t get that call not in July or August or September, perhaps not before Christmas or even in 2020 at all. Why would they call me when there were all these people with cancer who needed surgery. Surely they would get priority over little old me. I don’t have cancer right now although my problems stem from the cancer treatment I had back in 2001.

My Dr disagreed, she said that my surgery was urgent, she would remind the hospital to get me in asap. True to her word, at the end of July I was told to go in at 7am 18th August. I put it down to the shock, but now realise it wasn’t that. I became very ill within days of receiving my appointment date. I could barely walk, or eat. My strength was virtually nil. I did hope that I would recover before my allotted date. No such luck! A few days before my surgery I was asked to go in at the earlier time of 6.30. We weren’t sure what traffic would be like or how long it would take me to lug my bag from the entrance to where I needed to be. (obviously the furthest part of the hospital from the main entrance). I couldn’t take anyone with me to carry my bag so I soldiered along, stopping at various seats to rest. I still reached my destination far too early. 5.45am! I don’t usually know that time exists.

Anyway. I had my surgery. At first I was horrified that my life was now changed for ever. No going back, it was so awful that I didn’t think I would ever learn to cope. I was in theatre for 6 hours and in hospital for a week. In normal circumstances I would have spent that week chatting to the other patients who came and went during my stay. Unlike me, I didn’t speak to any of them. I just didn’t want to. I was probably feeling very sorry for myself.

I came home and was still in a lot of pain as well as weak and not eating. It took several weeks before I could start to get my appetite back. Gradually my strength increased. I started sitting up instead of laying on my back most of the time. I had nobody looking after me. I was and still am carer for my mum. Lockdown may have finished but we still couldn’t have people in the house. Only our cleaner every 2 weeks fully masked up. My ex who was our support bubble is the only other person who visits.

My nurse would normally visit every day to make sure I was fine with my new reality and was able to cope with everything. She could only phone me to see how I was doing. Now almost six months later I have got used to all that my new life entails. The problems I had in the early days are now a distant memory (most of the time). I am getting used to the reordering system for my supplies.

Now I guess I should put you out of your confusion and tell you that at my tender age of under 60 I am now a bag lady. My bladder wasn’t working, it had not only shrunk but had holes in it. I wear a bag on my stomach (stoma) which I have to empty regularly throughout the day. I have a night bag which I attach to it with with a longish tube for night times. I have a strap which keeps the tube against my leg whilst I sleep. Not very often but occasionally like 4.45am today I wake to discover my bed is wet because I have become disconnected. The tube was still strapped to my leg but was no longer attached to my bag on my stomach.

It is times like this that I am glad I am single and don’t have a partner to disturb in the middle of the night, sorting out the bedding.

All things said and done although this is now my reality and it isn’t something I had ever thought would happen to me. I feel so much better now, than I had for a number of years. I still get extremely tired. I try not to do too much but I’m gradually getting stronger.

Life will never go back to normal for me but then I doubt it truly will for anyone now. I am leaning how to live my new normal.