Health

Writing Prompts for August

August 5, 2019 by Anne Sweet 5 Comments

Prompts for the Month – Capturing, Financing, Controlling, Exchanges, Motivating

Capturing

Ever since I can remember I have been capturing memories. I have boxes and boxes of photos and photo albums from the days before digital photos were a thing. My many digital photos I wouldn’t dare to count, it would take me forever.

I have also been capturing memories with diaries. Hidden in my wardrobe I have a selection of handwritten diaries starting from around 1982! The most regular years are from when my older children were little, 1988 to about 2000. I stopped writing things down then because life got too tough and the memories from the next couple of years are imprinted on my brain and I don’t need reminding of them.

By the the time my younger children were born then online journalling was a thing. I started my first blog in 2003. In more recent years I’ve been capturing so much of our life right here on Raisie Bay. It’s full of all our lovely memories, and some of the not so lovely ones.

This post about Stars 7th Birthday Party has been one of my popular posts of all time.

And here’s a captured memory of my Little Man in a Fire Engine in 2014

A little blonde haired boy looking out of the window of a fire engine

Financing

Being in the UK, I am lucky to have the help of the wonderful NHS. However, it’s sad to see that it’s struggling so much. If I decided to go private then the cost would be well beyond my means, and my lovely NHS consultant could refuse to treat me once my money ran out.

Why would I want to go private? Well, I don’t complain about the NHS because I know I owe them so much, but my treatment has not always been good. I’ve even had to go to the complaints department because of the way my daughter has been treated. But my treatments cost a lot and the NHS funds them.

There are other treatments I could have that would cost a lot more. There have been mixed results from these treatments, but I guess I’ll never find out if they would work for me. My consultant is trying to get funding for one of them, but he is very doubtful it will be approved.

Another treatment is HSTC a form of stem cell treatment. I could fight for the treatment on the NHS but so far I only know of two people with my condition in the whole of the UK who have had it on the NHS. One worked, the other didn’t. I could go private, there are groups which encourage you to fundraise and got to Russia or Mexico for treatment. I really can’t see myself doing that. I’d never be able to raise the money needed, I’d not want to leave my family for the months it takes, and I wouldn’t be entitled to help from the NHS if it all went horribly wrong.

So, although unlike many other’s with my condition in other contries. I’m lucky that I get treatment for free. But Finances also play a big part in my treatment.

Controlling

When it comes to my illness I like to think that I’m controlling it rather than it’s controlling me. It’s the cup half full approach and you have to have the right mindset. It doesn’t always work and I have my dark moments. But I have to have faith in myself that I can do this.

I have three young children and there is no way I’m not going to be the mother they deserve. They know I’m sick, it’s a little too obvious, but they have dealt with it well so far, because I don’t let it control our lives.

On bad days I could very easily lose control and let the pain take over. I have done and it’s awful for everyone, not just me. But mostly, I have learned that I need to take care of myself and hopefully take control of what I can and can’t do.

Exchanging

The only thing I can think of for this prompt is that next week I’m exchanging my view of my back garden for one of the beach! I’m so looking forward to getting away and enjoying a different view and more relaxed life for a few days.

Motivating

After last months dip into self pity and despair, I feel the sunshine on my face and the fact that I have a holiday due very motivating. I have my children at home on their school holiday and they help keep me motivated too. It’s so much easier not to be self absorbed when you have little ones around to keep you on your toes.

Of course, life can be more difficult too. The pain doesn’t subside just because you have more to do. And some days have been very difficult. But I keep going so I guess my children are my motivation for getting through each day, and indeed for getting through life.

Linking up with the lovely Sheryl from A Chronic Voice who gives us these prompts each month. Together we have built up a lovely community, together we are able to express our voices about our illnesses.

Writing Prompts for July – Justifying a Chronic Illness

July 3, 2019 by Anne Sweet 7 Comments

Justifying, Starting, Analysing, Concluding, Planning

Each month I join in with a linky for those suffering with chronic illnesses. The lovely Sheryl from A Chronic Voice gives us some prompts to start talking about how we are feeling. It gives us a chance to write about things we normally wouldn’t talk about and by linking up we have become a community of people who understand. But, by writing these posts we also have the opportunity to explain to others just what it is like living with a chronic illness. This months prompts are justifying, starting, analysing, concludcing and planning.

Trigger Warning: This post mentions suicidal thoughts

Justifying

As most people with a chronic illness will understand, Justifying ourselves is something we are most familiar with. My family are always telling me I don’t need to justify myself for needing extra time to relax and recover when I’m not at my best. The problem is, I don’t actually have a best.

I am ill all the time, every day I feel like crap. Sometimes, I honestly feel like I cannot go on like this. Resting maybe helps me from total burn out, but it doesn’t really matter, when my body goes into spasm it doesn’t care about what needs to be done.

My family do not expect me to apologise for sleeping and not being able to move for hours on end. There is no need to be justifying myself.

But how can I make myself see that? I don’t need to justify myself, but I still feel guilty, because this is not me. I am used to doing everything, being in charge, taking control, being the rock of the family. But in the last three years I feel like I’m the rock that’s making us all sink to the bottom of the lake.

Starting

I know it’s been over three years, but recently I’ve been starting to accept that I have to make plans. Recently I was offered help from a health visitor. She arranged for a few extra bars to be put in place so I have more places to grab when I need to stand. Then she offered to turn my bathroom into a wet room and put a lift in my house. She believes I wouldn’t be safe on a stair lift so that was not an option.

I turned her down.

It was at that point that I realised I’d not accepted just how ill I am and that it‘s not going to get better. For three and a half years I have been searching for a cure to make me better, when in reality there isn’t one.

So, now it’s starting to sink in. I tried calling her back to change my mind but reached her answer phone and she never replied. Now, it’s too late and if I want the wet room and lift, I will have to start the process again. I don’t know if I was lucky, but it went through pretty quick last time I made my enquiries, so maybe I wouldn’t have to wait too long. But, I’m only starting to accept that they are what I need, so I’m holding off a little longer.

Analysing

I sometimes wonder if my diagnosis is correct. But it’s hard comparing yourself to other sufferers when you suffer from something so rare. So I’ve been analysing my condition more closely, finding out what makes me worse and what makes me better. I’ve also been taking a closer look at my medication and analysing what they are doing for me.

While I was at a real low point recently I asked Google about how many of my pills I’d need to take to end it all. Not just the pain. All of it, all of me. Selfish I know and I couldn’t do that to my children and my husband and family. So, I thought what would happen if I just stopped taking my medication suddenly. Then it wouldn’t look like suicide would it?

I get these low points sometimes, but I don’t want to hurt my family, so I know I wouldn’t go through with it.

Then I was researching care homes. That way, I could just get away from it all, take away all the pressure off me to ‘perform’ a normal life, and all the pressure off my family for dealing with me. But, I would miss my family too much.

Analysing my feelings I realised that I was depressed. I am depressed. I always have that black dog biting at my heels. But I keep him on his leash. Too much life in me just yet.

Concluding

My conclusion is that I need help. My GP would probably just offer me more pills to my huge collection. I already take anti-depressants, so what’s the point.

I need to help myself and that’s my next plan!

Planning

So, we come on to planning. Keeping busy with things helps a lot. I love my crochet and listening to my audio books. I also love planning, so much to plan for and that’s what keeps me going.

We’ve just celebrated the first birthday of four in the next six weeks. So, it’s Boo’s birthday next so I need to plan some treats for her. Then a couple of weeks later it’s the Little Man’s birthday. Just two days after the Little Man’s birthday we go away to Cornwall. I haven’t been to Cornwall for many years so that’s something to really look forward to. Then a few days after we get home it will be Star’s birthday.

So much to look forward to, so much planning to do. There is no time at all to think about how crap and useless I feel. Even if the best I can do is plan from my laptop, or my book of lists, then that’s what I will do.

Selfish

Not one of the prompts but something I wanted to add. One of the things that made me realise that I couldn’t go ahead with ending things is that one of my longtime online friends is currently in a hospice after a long battle with cancer. She fought long and hard and tried everything to stay alive. She was doing it because of her family. My heart goes out to them.

Thinking about her made me realise that I was being selfish. My family need me too, and although I may have to leave them at some point, I‘m going to fight this stupid condition to ensure it won’t take me anytime soon. There is nothing more enlightening that realising that someone else is losing their fight when you are thinking of ending yours.

I’m in it for the long run, if I become even more useless I’ll still be here to watch my children grow and live their lives. I’m not going anywhere without a fight.

June’s writing prompts can be found here

What it is like Living with a Chronic Illness

January 16, 2019 by Anne Sweet 20 Comments

I can’t speak for everyone because we are all different. But living with a chronic illness is often misunderstood.

Imagine that the next time you get one of those horrid colds that knock you off your feet, disturb your sleep and make you feel like crap for a few days.

Then you get better and go back to normal, glad that it’s over, you survived intact.

Now imagine you don’t get better and it just carries on like that for weeks on end. Or maybe it gets better for a while but you know it will be back again in a week or two. That’s what living with a chronic illness is like.

The Spoon Theory

A lot of people refer to the Spoon theory. When you are not well you can imagine a day where you wake up with a number of spoons. Then after every activity you take away a spoon until there are none left. Sometimes they can last all day and you may even have an extra one for the next day. But you can also have days where the spoons get spent very quickly and you are left unable to do anything else for the rest of the day. You can even overdo things one day, leaving you with fewer spoons for the next day.

A lot of chronically ill people refer to themselves as spoonies, I am a spoonie.

My Story

Three years ago I was taken ill quite suddenly. I don’t know what caused it but I’ve learnt since that shocks can trigger your body into attacking itself. And I’d had a shock when my Father-in-Law had suddenly dropped dead in front of me with a heart attack,while I was taking him for a hospital appointment.

Two days later I was back in the same hospital myself, virtually paralysed. Totally numb. I was originally diagnosed with Transverse Myelitis and told I would recover within a couple of months. A year later I was diagnosed with Stiff Person Syndrome plus PERM and told that recovery was unlikely.

Things I have Learned Since I Have Had a Chronic Illness

Life with a chronic illness is hard, harder than you can imagine.

Life is also difficult for loved ones, they have to watch you suffer and see someone they depended on become someone they have to look after instead.

It’s difficult to carry on with a normal lifestyle, even if you are well enough to continue working you will need to take lots of time off sick.

It’s hard being a Mum, especially when your child needs you and you can’t be there for them.

You’re mental health deteriorates, you may start out feeling positive that you can beat the illness, but as time goes by you feel like it’s just not worth living any more.

People don’t like to be around sick people.

You find that people just don’t understand how you can be ill so often.

People stop asking how you are.

You stop being invited to events because people just assume you won’t be well enough to go.

It’s difficult to plan for anything because you don’t know if you will be well enough.

A lot of partners cannot cope with life with a chronically ill person and decide to leave them.

Staying Positive

It’s amazing what a difference having a positive attitude can have. I am not always positive, but when I pull myself out of my self-pity and hold my head up I feel so much better.

Life is not always easy, not for anyone whether you have a chronic illness or not. But, it’s up to you how you approach life, how you deal with it, that makes things better. I may not find any relief from my pain, but it certainly makes me feel better when I can laugh and have fun with friends and family.

I’ve just had an awful weekend, I’m not sure if it was side effects from my infusions, or related to something else but I really was ill. I could barely do anything but watch television. My family just left me to it. But there is only so much I can take, I will push myself to do things, not give in to the pain, probably even make myself feel worse in the end. But, in my mind I want to be the winner, not the giver upper!

There has to be a balance though. Sometimes when you are rock bottom it’s okay to admit it and give in, so long as you are willing to fight for it when you are ready. I gave in, I watched 3 hours of Friends and 4 hours of Doctor Who over the weekend. I’d had enough by then, enough lying around and giving in. But I’d also allowed myself to wallow and rest. It was time to fight.

One day I know the fight will be gone, but until then I’m going to polish my spoons and keep on keeping on.

courage is not having the strength to go on, i'ts going on when you don't have the strength

Mental Health Awareness Day

October 10, 2018 by Anne Sweet 17 Comments

The prompt for Blogtober18 today is, Just Be Yourself #Mental Health Awareness Day.

My daughter saw on the television this morning that it was Mental Health Awareness Day and said that they would probably talk about mental health at school today. I replied that it was good to talk about it as everyone’s mental health was important. She looked confused for a while and then asked, “does everyone have mental health then?”

Then it was my turn to look a little confused but I soon cottoned on. She was taking the term mental health as meaning that something was wrong. It’s true that a lot of us don’t think about our mental health until something goes wrong with it.

I explained to her that everyone has mental health just like they have physical health and that they both need taking care of because they can both get sick sometimes. If you get sick physically you seek help from a doctor or the pharmacy, or maybe you just take extra care of yourself until you feel better. It’s the same with mental health, if things don’t feel right then you should seek help and possibly treatment just like with your physical health.

Keeping Well Mentally

We all try to take care of our physical health but do we take as much care over our mental health. Sadly, a lot of us don’t, but it’s not so difficult to do. Self care is really important, especially when professional care when something goes wrong is so difficult to get.

So how do you take care of your mental health?

The first thing you should do is talk about your feelings. Find someone who is prepared to listen and connect.
Look after yourself physically, get some more exercise or just fresh air occasionally
Eat well and moderate your alcohol intake.
Be more mindful, take time just to be in the moment, not thinking about the past or the future.
Find something new to learn, or even do some puzzles or crosswords. Give your mind something else to concentrate on.
Reach out and care for someone else, it can boost your self esteem and create a closer connection.

If you do feel your mental health is suffering then seek help. If you were physically ill you’d ask for help, it’s just the same, it’s your health.

Don’t Judge

No one walks in anyone else’s shoes. Judging when you don’t know the full story is the worst you can do.

It’s not only the ones with mental health issues but their families that suffer. People tend to hide mental health issues, find them difficult to talk to, particularly if they are the carer. Life can be difficult and awkward but they may feel less inclined to talk or explain why.

Everyone deserves to be treated with kindness, no one should be judged

If you feel you have a poorly mental health then please find some help, even if it’s just someone to talk to.

Linking up to A Blogging Good Time

Mummy in a Tutu

Lucy At Home UK gentle parenting blogger

Control My Pain Project

September 18, 2018 by Anne Sweet 6 Comments

The control my pain project is an online course which helps those with chronic pain restore their health, comfort and happiness.

The six week holistic pain management program leads you week by week into understanding your pain and how it affects you both mentally, physically and socially. It provides you with resources that you can use to thelp you reduce your pain and improve your attitude towards it.

The Program

The program is split into six weeks, but takes around an hour and a half maximum to work through the videos and quizzes. You are then required to put what you have learned into practice for the rest of the week. The aim is that by the end of the program you will have practised each weekly tasks so that they become natural to you.

There is nothing too difficult to digest or to do, the program is pretty easy. It explains everything really clearly and the tasks and quizzes are not difficult to complete.

The program begins by explaining the way our body, mind and what we can physically do are all connected. You are introduced to the biopsychosocial approach to pain management. For this you will learn about how your thoughts and feelings affect both your pain and your social life.

You will learn how things like mindfullness and communication skills can improve your mental and physical health. You will also learn how to practice these alongside relaxation and thought processing techniques.

Each week has video presentations by Pam and Jackie. Jackie is your guide and Pam is a professional in pain management and rehabilitation and has over thirty years experience.

My Thoughts

The program is a detailed weekly plan which teaches you why an holistic approach can work, what techniques work and how to put them into use.

Personally, I already use a lot of the techniques described but I did identify some problematic areas that I still have and I am putting what I have learned into practice.

Of the techniques that are offered that I already use I can sincerely recommend them. A lot of people with my condition spend a lot of time in the Accident and Emergency Department. I am convinced that the reason my visits have been more limited is because I know of these techniques. During an attack I am able to control my body’s responses with my mind and relaxation techniques. I truly believe that everything is connected and a calm and relaxed approach can improve your physical condition.

I am sure that if you do not know these techniques you will be able to relate to the opposite effect. Just think to a time when your emotional distress has left you feeling physically drained or in pain. Excessive crying can leave you exhausted and may even give you a headache.

Support and Information

Signing up to the program gives you access to a closed Facebook group and support by e-mail. There is also lots of extra information which supports the program available on the website in the form of a blog and a load of downloadable resources.

If you want to know more you can sign up to a free masterclass in the form of three videos sent by e-mail, this gives you a real feel for the program.

Joining the program gives you the full course and all the resources along with a support group. Full access costs $59, around £45 at the time of posting this.

If you do sign up for the free class or the course, be sure to let me know how you get on and what you think.

Disclosure: I was able to try the course for free in return for my honest review.