Dealing With The Down Days.

The down days -

The days we pray we could magic away and that would stay away. 

In reality .. 

They are the make up of a spoonie's life. 

The 'how are you?' question is the one we dread the most. 

How do we answer - either way we are wrong.  

You could answer ;

A. I am doing a little better, improving. 

Their thoughts - wow you are better now brilliant. 

B. Today isn't a good day, I am struggling. 

Their thoughts - just have an early night and you will feel better in the morning. 

C. Today is a slow days.

Their throughts - get a grip! Pull yourself together you are a little tired.

D. I am aching less today. 

Their thoughts - let's go out, go shopping, why can't you still walk far? 

E. I am fine.

Their thoughts - she is an attention seeker.

None of the above explain how you feel or are answers for people to truly begin to understand. 

Many would argue that people with chronic illnesses and diseases are attention seekers. Always moaning about their symptoms and how they are feeling. When if you felt how we feel you would be a hell more dramatic than we are. We did not ask for this life challenge. If we were attention seeking don't you think we would have got bored after years of battling ?

We all love a little extra attention when we are feeling under the weather. Breakfast in bed, flowers, tablets brought to you and a cups of tea when you require one. Though after a few days - after a few days being bed bound the novelty wears off. The TV programs become boring and you dream of fresh air. That concert you had planned, you want to go to! Luckily for you, a good few days rest and you will be on the mend able to go to that concert you wanted to, go out clubbing, go for cocktails, take that trip to London - no problem! 

We cannot. 

Our lives revolve around the aches, the pains. 

Illnesses and diseases that are not cureable with a 48 hour dose of tablets, a few days in bed and a good nights sleep. 

We can't just hop up out of bed when we feel like we have had enough to go to that concert. 

If only.

So no- we aren't attention seeking. 

In fact,

You only know a quarter of the suffering the majority of the time. 

Is your lack of understanding your fault?

No. We will never blame you for not understanding as we ourselves rarely understand. 

It is the ignorance and arrogance that we often get shown towards our health, appearance, wellbeing and daily presence that is frustrating. 

Our answer to your everyday question may not be positive and it may not even be the truth in fear of being judged. 

We don't want to be seen as negative, buzz kills and 'moaners'. We want you to understand however juggling it all is sometimes difficult. 

So please accept our answer and if short and sweet, know that it's our 'auto' answer- an answer to hide the truth and avoiding explanation and often an answer that is short is short because we ourselves don't know how or why we feel the way you do. 

What do we also hate? 

A good night's sleep and you will feel fine!

If only!

That to a spoonie is the dream!

Not only do we pray for sleep but we wish we could wake up - disease, illness and pain free.

The best way to approach this issue is to wish the spoonie well in their treatment and tell them you are praying for their health to improve.

This allows the spoonie to realise you understand that chronic illness mostly means for a lifetime and that managing health is the key 🔑, that a cure can't be the goal. Simply managing is the goal. Also showing you understand there are no quick fixes or magic over night cures.

Once you have been more engaging in this way your spoonie will open up to you far more and you will begin for yourselves to get a wider insight into the struggles that go on. As the spoonie will see you are making an effort to understand. Not saying your 'auto' answer of 'an early night will do you the world of good.' 

It's true.. like in everything, until you yourself have experienced whatever it may be you never fully understand.

I know I do- I wish that you could all experience even just a day in my shoes. To help you understand and see how you all would react to the difficulties you were faced with.

A. To help you understand. 

B. Recognise I actually do a good job of how I deal with things.

C. Learn tips of how others coped. 

Please understand that our good days are equal to some of your gloomier days. 

We are not lazy! 

Just because our main daily task was a 30 minute food shop and yours was sky diving from our plane. 

That 30 minute shop is just an achievement as your sky dive. 

Remember 

We may smile. 

But you may not know that smile has come after three hours of tears. 

Looking great, 

I managed to wash my hair, and spend an hour planning out an outfit. 

I didn't just roll out of bed and think yes! Jeans - grab, fave blouse - grab, killer earrings and a striking necklace.

Outfit completed 30 seconds.

No,

It takes going through the whole wardrobe then settling on something that wasn't what you really wanted to wear but because it's comfy and it hides you. 

So yes I stand in front of you smiling. 

I am looking around for that chair, panicking about my snack or food looking odd to others, pain taking over me, admiring everyone else's outfits and feeling ugly, watching people laugh and enjoy fighting back your tears of sadness and pain and flagging despite only being out 20 minutes. 

For you to say - 'how are you? You look well.' 

Your insides begin to crumble as you pull an answer together trying not to cry. Them not knowing the difficulties you are battling with and what it has taken for you to be there!! 

You simply wish they would invite you to a seat or offer you a drink and dodge the 'how are you?' question. Though all spoonies know we can't avoid these questions and is why often you get the same 'auto' response as we ourselves are too exhausted to even begin explaining to you what's truly going on.  

Luckily our loved ones will know us well and will only have to look into our eyes to know the truth. So they won't ask the questions because they will already know the answers. 

*** 

On our down days we won't make contact. We may be hard to reach. We need that time to ourselves. 

As unlike attention seekers we don't want to provoke attention. 

We need days to re-charge, get back in the game and just simply cry and accept the pain. 

I had a day like that just yesterday. 

My mind hasn't been as sharp lately which is getting me down a little, my fatigue is very high since last week's treatments, my aches are unbearable, bad brain fog and nausea & stomach aches have been very high.

During these days you are trying to be your own cheerleader. You can't always deal with the outside world as well.

When feeling sick I am trying to eat what I really want to eat to motivate me to eat. I am fatigued so easy meals are key, stress and worry needs to be directed to awareness work and mindful colouring. 

Since coming home especially and over time since being diagnosed I am beginning to realise and accept that flipping heck my body does need rest. Everyday it runs a marathon and more to fight all those viruses and keep me alive. Just this week since being home my body temperature has been up and down which sends my body haywire. For years I have ignored my body for my own pride and to push through to prove I am normal. When the hard hitting fact is I am not normal. Did I deserve this pain, no. And neither do I deserve the cruel way I have been treating it day in day out so that people didn't think I was lazy, crazy and attention seeking.

Now I am learning and accepting when my body is aching - it isn't being silly and should be ignored. I need and must take it steady, sit down, rest more. Yes it's taken me a long time to realise that my body does deserve rest and it still doesn't sit well with me. 

Going from a swimmer who represented her country, always on the go to a girl whom can't feel her arms and legs in a morning and is unsure if she has any or not. 

Life is a lesson and I am learning slowly. Nobody or nothing can prepare you for these situations so nobody can expect me to be a pro even after years let alone over night. We learn as the journey unfolds. 

Do I regret not realising and learning the above sooner?

Hell yes!! My health could have been at a better place. However I can't change that and living in regret is only going to make me feel worse and add more to my already overflowing plate. 

I am not a bad person and therefore should when I go into auto mode of pushing myself should take a moment to address the situtation and tell myself - 'No I don't deserve this!' I don't deserve the pain it will cause me being stood up for 30minutes to watch this show in agony but be front row. No I do deserve to sit in a chair and soak the show up maybe from afar but your pain is manageable and you can enjoy the show. 

Compromising and people will appreciate and accept.

Strong supportive people are so important and they will always work with you. They won't find your 'weaknesses' an issue they will respect you for being respectful to yourself and listening to what you need. They won't see the fact they may have to watch a show afar with you as a problem! They will just be pleased to see you enjoying yourself and have the opportunity to experience this experience with you. 

You have take this into consideration to help you and how you see things as strengths not weaknesses.

*** On our down days we won't make contact. We may be hard to reach. We need that time to ourselves. As unlike attention seekers we don't want to provoke attention. We need days to re-charge, get back in the game and just simply cry and accept the pain. I had a day like that just yesterday. My mind hasn't been as sharp lately which is getting me down a little, my fatigue is very high since last week's treatments, my aches are unbearable, bad brain fog and nausea & stomach aches have increased. During these days you are trying to be your own cheerleader. You can't always deal with the outside world as well. When feeling sick I am trying to eat what I really want to eat to motivate me to eat. I am fatigued so easy meals are key, stress and worry needs to be directed to awareness work and mindful colouring. Since coming home especially and over time since being diagnosed I am beginning to realise and accept that flipping heck my body does need rest. Everyday it runs a marathon and more to fight all those viruses and keep me alive. Just this week since being home my body temperature has been up and down which sends my body haywire. For years I have ignored my body for my own pride and to push through to prove I am normal. When the hard hitting fact is I am not normal. Did I deserve this pain, no. And neither do I deserve the cruel way I have been treating it day in day out so that people didn't think I was lazy, crazy and attention seeking. Now I am learning and accepting when my body is aching - it isn't being silly and should be ignored. I need and must take it steady, sit down, rest more. Yes it's taken me a long time to realise that my body does deserve rest and it still doesn't sit well with me. Going from a swimmer who represented her country, always on the go to a girl whom can't feel her arms and legs in a morning and is unsure if she has any or not. Life is a lesson and I am learning slowly. Nobody or nothing can prepare you for these situations so nobody can expect me to be a professional even after years let alone over night. We learn as the journey unfolds. Do I regret not realising and learning the above sooner? Hell yes!! My health could have been at a better place. However I can't change that and living in regret is only going to make me feel worse and add more to my already overflowing plate. My personality is a go getter, hard worker and strive for the best & success so how I have dealt with my situtation preciously is just automatic to me. I dealt with it how I believed was right and how I would have dealt with any issue. I am now having to check in and change habits to address my battle in a better, healthier way. I am getting there - but it's hard, hard to break down the walls I have spent nine years building. Accept I am suffering and the pain & symptoms are unbearable instead of just dismissing them as me being silly and stupid - to pull myself together and get on with it. I am not a bad person and therefore should when I go into auto mode of pushing myself should take a moment to address the situtation and tell myself - 'No I don't deserve this!' I don't deserve the pain it will cause me being stood up for 30minutes to watch this show in agony but be front row. No I do deserve to sit in a chair and soak the show up maybe from afar but your pain is manageable and you can enjoy the show. Compromising is key and not a weakness. People will appreciate and accept that. Strong supportive people are so important and they will always work with you. They won't find your 'weaknesses' an issue they will respect you for being respectful to yourself and listening to what you need. They won't see the fact they may have to watch a show afar with you as a problem! They will just be pleased to see you enjoying yourself and have the opportunity to experience this experience with you. You have take this into consideration to help you and how you see things and your weaknesses. On the down days - how do I make the sun shine? Simply thinking of what you want from life, all the good people that surround you and the amazing memories you have. Remind yourself of your support system. Depending on you pain and mood levels arrange a phone call, cuppa or a lunch date with one of your main supports. Talking to them will really help you. Rest. Have a day of doing tasks you enjoy; watch a series, a movie, read, mindful colour, yoga and/or sewing etc. But stay chilled. Write a bucket list - a list of all you hope and dream to do. Look over memories - whether it's watching old videos, or photos. To remind yourself the love, and joy you have experienced in the past. Let me know how you cope with you darker days. Reach out - you aren't alone. I am so thankful the sun is shining for me today, so that my BBQ event can be a pleasant one. I am hosting the BBQ for all the people who have supported me the most and continue to support me, to show them how grateful I am for their support and to enjoy all of their company before returning for further treatment at Breakspear next Sunday.

These are the days we live for. To create memories with our most loved ones that last a life time. You are loved .. Remember that. Love and peace S Xoxo 

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