Two words got me through this year

Reflecting back on this year, two words gratitude and patience stand out. Their meanings have become very apparent.

Gratitude – When I notice everything around me. I feel grateful. I’m laid in bed right now but I’m grateful I have shelter while the rain pours outside; I’m grateful my dog is lying next to me (even better she is on her own side); I’m grateful to be wrapped in a cosy duvet, safe and warm. These things are small but it is this detail that has helped get me through this year.

I had a blessing bowl in my living room. Each day I wrote down 3 things that I was grateful for. After doing this for a month I realised that no matter what happened in that day, there was always something to be thankful for.

*Harris (2007) states: “count your blessings and feel the richness around you”. Feeling grateful helps me see my world in a better light. It gives me a boost knowing I have what I need and I am okay.

Patience – I don’t mean feeling annoyed because Sex Education finished and its weeks before the next series (I’ll never be that patient). I mean waiting until I have rested enough to be able to do a thing. Yesterday we bought a Christmas tree. Like most, I was excited to get home and decorate the tree but I grew too tired and rested instead. Tomorrow’s another day.

These qualities had such a great effect on me, but why?

The psychology bit…Our minds can influence our emotions. Good feelings can be from the smallest of things; tidying a room or watching the sunset. Our health comes first. Stuff can wait. If we stop to appreciate everything around us, feel good hormones are released and our mood is boosted.

Pics taken from the book: The Boy, the Mole, the Fox and the Horse by Charlie Mackesy (2019).

*Russ Harris. The Happiness Trap (2007).

A Day In The Life Of M.E – A Poem

I sit in silence; my brain kicks in
How did I get here in life?
Not going anywhere, not doing too much
As my illness gives me strife

My every day seems simple
I sit, I read, I watch TV and sometimes like to write
I don’t spend long out of the house
For my energy is slight

Most of my day I feel drowsy and rest is all I seek
I enjoy a plod with our cheeky dog
But don’t plan much past the same week

I like to meet new people
But don’t ask me what I do
It fills me with great angst
I know you’ll judge me too

You sit and laugh with me and we set the world to rights
But then you had to quiz me
About not working, to you I look alright

You only knew me a short time
And you think you know my life
You will never know the suffering
The exhaustion day and night
My weakness as I try to walk, my inability to talk
Loss of thinking, loss of focus, loss of erm…what’s that word again?

I enjoyed your company in part
But then I saw your different light
You forget we’re all just human
So different in our own right

You disrespected me and left your manners behind
But don’t worry once you’ve left here
You’re out of sight, out of mind

I sit in silence my brain kicks in
Thoughts running through my head
When will I make it out again?
What ventures lie ahead?

Maybe meet a better person
Someone caring, someone kind, someone true
But for now I rest, relax, find calm
Daydreaming over a brew.

Friends, why are you so crap?

Time and time again I hear from fellow chronic illness sufferers how over time they have lost their friends. I’m not talking acquaintances who they met through work or at the local pub. I mean people who they’ve spent years getting to know, who they told secrets to, laughed, shared jokes and be silly with. People who once loved and accepted them and all their quirks. These friends are not there now. They gave up trying to make arrangements for them to be cancelled, they stopped calling when the phone wasn’t answered, they grew impatient when texts weren’t returned the same day, they got angry when the other person said the pub was too busy for them, they got bored when the other person could only manage a quiet café to meet up. They stopped inviting the other person to social gatherings and since they no longer meet up regular, they eventually stop all contact.

And why? Because the other person got sick?

Now I do understand that it is hard for the well person to get what they need from a friendship (companionship, support, trust, dependency) when the other person is sick. But what I don’t understand is the complete abandonment! A sick person can no longer be reliable through no fault of their own, so why add to their problems?

There are things that can be done to give each person something of what they need. You just have to think a little out of the box.

To the well person

1)Try making a plan B that way you won’t feel so disappointed if your sick friend cancels your plans. This could be: Altering your plans so your friend feels more comfortable to still meet up. Try a zoom call instead or a phone call with loudspeaker on and a good gossip with a drink and cake. Try it, it’s like they are there with you and makes it a bit different than a usual call; Reaching out to another friend or family member and doing something with them instead. If you know someone is busy, ask them if you can join in/help out; Do something you love or maybe haven’t done in a while try walking, cinema, shopping, games, crafts, baking. Hey maybe bake something and take it round for your sick friend.

2) If you find you cannot meet up at all. You may naturally feel your friendship is drifting apart. That’s ok, it’s normal. Still try to keep in touch. Being unwell takes its toll mentally so a quick message to check in can be all that’s needed to perk up your friend and you’ll get a boost from doing it yourself too. Even if it has been a few weeks or months. Any contact says you are thinking about them and it should be well received.

3) If there is an occasion coming up try and do something that will help your friend feel included. Always invite them. Even if you are certain they won’t show up. Give them chance to decide themselves. They will always appreciate an invite and may actually be able to make one event. It will be something they can look forward to and create a good memory for you both.

4) If they cannot make an occasion try arranging something separate so they can join in the celebrations. Try creating a bedside party room with balloons, games, sweet treats or flowers (if they’re on a special diet). You don’t need to stay long but if the mood permits it could last a few hours especially if a few friends are there too. Remember it is their time so you will need to agree what they feel comfortable with, to not increase their symptoms. Sometimes just being with other people is all that’s needed to boost their spirits.

5) When you do meet up try being neutral in your responses when feelings are expressed. Saying things like ‘’that’s sounds tough for you’’ or ‘’that must be difficult to cope with’’, helps make them feel listened to.

6) If you do ask about their illness, try and read up on it beforehand. It will show you care and that you are trying to learn to help and understand them.

7) Break up heavy topics with conversations on lighter subjects where you can both have a laugh too.

8) If you visit their home, please remember they are unwell so the usual ‘guest’ status does not apply. Be ready to make your own drink and offer to help with anything they may need. Don’t be too forceful though, some people (like me) are stubborn and like to feel we can still do things for others. After an hour ask if they are happy for you to stay. It gives the person chance to say if they need a rest.

(Image from Heavenly Partners)

To the sick person

Friendships work both ways so you need to be mindful on how you behave with your friends too.

1)It is hard to be with someone who constantly complains about their health and issues. It also reinforces negativity to yourself and can pull your own mood down. So, if they ask you how you are, keep it short. Of course, you can have a big rant to air your feelings to them but don’t make it a habit. Mix it up and make sure you have fun to enjoy your time together. Your friend will have their stresses at work and relationships too so having a laugh gives you both a break from this.

2) When you get an invite to meet up. Don’t decline straight away (unless you have plans, of course). Give it some time or tell them it’s unlikely you will make it but you can only decide nearer the time. Be honest with your friend.

3) If you can’t meet up, have an alternative plan in mind. They will see you as putting in effort in seeing them. Saying no to everything will only put people off contacting you in the future.

4) Be kind. Always thank a person for an invite or for contacting you. They will know to keep you in mind next time too.

5) If a friend contacts you after a long time apart. Unless there is good reason to be angry with them or you feel they bring you down in some way, then accept them reaching out to you. I believe in ‘forgiveness’ especially when a person has good intentions. Life can get busy really quickly especially with families, so accept an apology and try to build a bridge. There’s always room for more friends.

6) People will make mistakes during conversations. They can’t truly know what you are going through and will unknowingly invalidate your feelings by saying things like ‘’I know I get tired too’’ or ‘’you’re getting older, you will struggle more’’. Sometimes you just have to bite you lip to avoid tension. Maybe give them some tips on what to say to you. You can judge the right time for this with a person but ultimately so long as you know they are well intentioned; you can often let it slide.

So, whatever you and your friend do and how often you make contact just make sure you still connect on some level. Your friend got sick they didn’t abandon you. Their every day is tough enough so don’t make losing a friend something else they have to go through too.

It’s the start of a new month. Let’s start as we mean to go on.

10 Things I do to boost my mood

It’s autumn and daylight is dwindling, even before the clocks change back. The temptation to snuggle up in bed all day while the rain pours outside is getting harder to resist. I feel even more lethargic and my body shrieks at every attempt I make to come out from under the covers into the cold. As the dark nights draw closer, the ability to keep upbeat gets harder and can so easily bring me down, making me feel fed up.

Search the internet for ideas on how to lift a low mood and results will soon have you outside, exercising and meeting up with people. This is fine when you are fit and able but for us chronically ill this isn’t so easy and often causes more stress than any sense of relief. Gone are the days when I could jump on my bike and head to the hills for a quick thrill and adrenalin fix. I can only slow walk at best now and even that has me suffering in the days after.

These days I don’t have many friends around me and family live away, yet I do still seem to steer round a low mood and it made me think about what I do that could be the reason for this. Here are my top 10 mood boosters:

1.Open the blinds. Every morning (yes 11:45am is still morning) I make sure the blinds are opened. I call this ‘letting in the day’. I don’t know what any day has in store so I let it in and see what it brings. Letting in as much natural light as I can gives me a sense of space, freedom and of living. If I’m sat in the dark, I feel closed off from the world and my mood soon slumps.

2.Change of clothes. I know I’m sick but if I lay in my pyjamas and dressing gown all day, I start to feel grotty. I find clothing can impact my mood. I guess it’s like putting on a suit for work, you feel strong and empowered ready for the day ahead. Wearing bed clothes makes me feel slouchy and sluggish. I also find wearing bed clothes during the day confuses my brain. I don’t feel the sense of winding down like I do when I just got changed into my pyjamas for the night. So, on a good day I make sure I change into day clothes even comfy tracksuit bottoms and a hoody does the trick. On a bad day when I’m really struggling, I find even just putting on fresh undies can feel a little better. [Side note: throw away your raggy knickers! You may be the only one to see them but believe me newer knickers are more secure and they just feel great].

3.Feel the fresh air. Some days I can’t get outside at all but I find opening a window a welcome relief as the house can get stuffy. Even when it’s raining outside, a blast of fresh air wakes up my senses. If I can, I walk the dog, it’s a slow pace but enough to feel the benefit of being out of the house. When I can’t I am often found sitting in my back yard breathing in the fresh air. One large breath in and then slowly out refreshes me as it works its way around my body.

4.Eat well. I’ve been watching my calorie intake as I’m determined not to put on too much weight. My challenge each day is to limit any high calorie foods and also get in my 5 fruit and vegetables each day. If I manage to do this and feel I have eaten well, it gives me a sense of achievement. My hair and nails are in much better condition too, bonus! Overall, a huge feel-good boost to my mood.

5.Occupy myself. My day is so very long. I don’t work and all my activities are limited but somehow, I get through it without feeling too bored. My partner works shifts so I think this is a massive help as he is home half of the day and his banter keeps me smiling. When he isn’t around, I seem to break my day up. 1 hour of TV, 20 minutes sat in silence with a hot drink, 30 minutes of adult colouring, 20 minutes of housework, 1 hour of tv etc (I know total rock and roll life). I try to mix up mental and physical tasks and rest in between. Being unwell has brought out my creativity. When my back was bad, I found glass paining and now that I am too shaky to paint, I colour or stitch and do the garden. When I’m too tired for these, I watch You Tube, listen to music or watch anything light hearted. Comedy is great. The right entertainment lifts my spirits.

No photo description available.
Last year I painted some jars to help raise money for charity.

6.Pamper and learn to enjoy ’you’ time. I love a pamper. It gives me a sense of healing and wellness. I was never a girly girl who practiced hair styles, makeup and doing nails but as I’ve grown older it is definitely something I try to do. I usually keep my finger and toe nails in check each week with a soak and a file but what I really enjoy is a face mask. I go all out. Light up the tea lights (round the bath if I’m up to it), play some gentle music and then lay and relax. It feels like I’m actually resting and healing my body as I enjoy a moment of calm…aah.

7.Limit negativity. I cut out many people in the past who make me feel bad. Now my interactions are with people I am relaxed with and who I find easy to be around and it has really boosted my self-esteem. The same goes for social media too. I try to scroll past anything that triggers an emotional response or that makes me feel inferior. My Facebook interaction is mostly with different groups now. Sharing experiences with chronic illness groups not only helps me but it gives me a chance to help others too. Though I do try to limit my time with this as too much can become overwhelming. Connecting with walking, nature, wildlife and photography groups helps to break up serious chat with easy pictures to look at instead of lengthy moans and rants. My favourite is the Akita group. We have an Akita so it is great to be able to talk and laugh about the things they get up to and this also gives me a break from chronic illness talk. My Illness is doom and gloom but my every day doesn’t have to be. Balance life with fun and laughter.

8.Stop overthinking in its tracks. I sometimes sit and find my thoughts whirling around and either stressing me out or bringing me down. Sometimes I just let these thoughts come a go and not pay attention to them. Other times they are louder so I have to virtually bat them away. For some reason this works and so long as I busy myself, I soon forget about what I was thinking about. This has taken practice to do and the hardest part is snapping out of that thought in the first place. I blame having too much spare time for stirring up past memories and overthinking. After doing my Psychology degree I know they are just thoughts and often our thoughts and memories are skewed so they’re not worth paying attention to. Unless they are good ones, then go ahead daydream away.

9.Chat to friends, family, neighbours. After lockdown I have realised how much socialising benefits me. I made friends with my neighbours and now know most of the street to say hello to. It is good to see people in person but since my good friends are out of my area and I can no longer drive, then WhatsApp is just as good. We have so many ways to socialise these days, I find any interaction gives me a boost and distracts from my illness.

10.Finally, I can’t help but mention my dog, Kita the Akita. My partner helps to walk and look after her but having a pet fills the home with joy. Our dog is such a character, the faces she pulls to show her mood, and the antics she gets up to. Last week she stole a chew from the pet shop, a vanilla sponge cake from the market and a packet of treats in another shop but when you look at her cute face it is hard to stay mad. She makes me laugh and her coat is so snuggly to cuddle. When I’m not being annoyed by the amount of dog hair in our house, I find she is very calming to groom. Looking after her gives me a sense of purpose too. A definite winner for boosting my mood.

Kita with her big smiley face.

So, these are my top ten things on how I keep a low mood at bay. They may not suit everyone but you may be able to adapt them to suit your needs. You may even do some of these things yourself. Let me know in the comments how you keep a cheery spirit through the darker weeks. I’d love to hear some suggestions.

10 Things that made my weekend away more crazy and less hazy.

It took 8 months (yes specifically 8, I checked the chat history) to plan and book a weekend away with friends. We all missed celebrating our 40th birthdays together during lockdown so it was well worth the wait, plus there were many deliberations among the 8 of us, and that kept us somewhat ‘entertained’ in the meantime (diplomatic use of inverted commas there).

After my night out with friends, the other week, I was feeling confident I could manage a night of drinking but what would a whole chaotic (I know my friends) weekend be like? Well, I thought I would be writing about my fatigue struggles but since everything went very smoothly, I’ve decided to give some thought about what I feel helped keep me going.

Our stunning holiday cottage

Where to stay? A holiday cottage far out-weighed any hotel. Here’s why:

No.1 – Being in a hotel usually means being in one room. As nice and as big as some rooms can be, if I did feel I could only stay on site, leaving the room would mean being around other guests, making small talk, looking more presentable etc this is all energy zapping. I can tell friends I need to sit in quiet but telling a stranger would just seem rude.

No.2 – If you rent a place which has outside space, there’s nothing more relaxing than sitting in the sun with a cold drink. Hotel grounds can be nice so you can do this too but you’re relying on their service to bring you a drink and again you’re close to other people which may not be so peaceful or relaxing.

No.3 – A cottage gives you space to retreat to your room for peace and quiet at any time. No long corridors, no “where’s the door key?”, no waiting for the maid to finish cleaning, no strangers to pass on route. Just off you go to relax in your own space and time.

No.4 – A hotel generally means set meal times. While I could possibly make a 10am breakfast the effort in getting up, dressed and being around strangers can be hard and almost certainly cause a crash after. It was much nicer getting up in my own time, going downstairs in my pyjamas grabbing a brew while I assessed what I could manage that day. The same goes for lunch and evening meal. Set times mean a time pressure to be there, being unwell means I need flexibility.

No.5 – If I were to crash, a hotel could mean I miss an entire meal. A holiday cottage has cooking facilities, so our time was our own. I ate breakfast at 8am, yes in my pyjamas, then went back to bed. I then ate at 11:30am (cold pizza from the night before, ha!) then we headed out. Not only was I not hungry too soon I also could join in with ice-creams later.

Delicious Thunder and Lightening
Ice-cream

No.6 – Room choice. I hadn’t realised how being unwell has shifted my priorities and now what I consider a luxury to be are anything that makes my life easier, calmer, more peaceful and above all more energy saving. There was a choice between a room with an en-suite or a larger room with chairs and a dressing table. I had to mentally play out my weekend to decide if I actually needed to shower at all and if sitting on a bed rather than at a dressing table would be better for me. I gave up the en-suite. I would only use the main shower once and since I wanted to attempt make-up and dry my hair, which I do sitting down, the dressing table would be best. Plus, the other chairs I could relax in and switch off in peace when I needed. My friends of course were made-up with this decision too.

Huge bedroom, a welcome retreat and perfect to relax.

No.7 – Packing. In my well days I’ve often tried to pack light. Not now. I’m sick. I compromise enough. I want everything to help me feel comfortable and if I feel I can use hair straighteners then I will take them. Looking nice gives me a boost. I’m on holiday, it’s a time for freedom. I like my partner’s mantra ‘’if it fits in, we can take it’’. Ok then, I will.So accommodation is important. Now here’s 3 things that I personally did to keep my fatigue at bay:

No.8 – I put down my mobile phone. At home I find myself picking up my phone first thing on a morning and either scrolling social media or playing a game. Time runs and so does my ability to see straight. I can literally start to crash after a solid hour of browsing. Not this weekend. I only used my phone about three times and one of those was to take photos.

No.9 – Be with good people. My friends didn’t question anything I did or didn’t do. We decided together what we wanted to do or where to go and it was an easy unplanned slow-paced day. My partner also was a huge help. He understands better than anyone the help I need and just gets on with it. Good people around you, takes away the stress of feeling like you have to justify yourself. Remember, any negative emotion zaps your energy too. Plus, you’re on holiday, you should feel free in every sense.

No.10 – Relax. You are there to have fun. Try not to pre-empt how you would feel if you do this… and how you would feel if you do that… I knew I would be eating high fat, sugary foods and drinking alcohol and that doing so would keep my energy levels high. I also knew I had the following week to recover. On a morning I ate breakfast and then went back to bed. After our afternoon out I went to bed for an hour. If I needed space I stayed in my room. I did what I could, when I could. I didn’t get drunk and then refuse to have a day out in case I crashed out and missed the evening meal. I think my relaxed mindset must have reduced the stress in me, thus giving me a bit more energy to keep going too.

All of these things helped me get through the weekend fairly smoothly. We had a late night Friday night, up until 2am. We had a bimble along the lake shore and sat by the Harbour before a game of crazy golf (I didn’t win, boo!) and a walk through the town. Ok, I didn’t go as wild as in my well days. I mean drinking diet coke, with my evening meal the next night, and going to bed at 11pm was pretty much unheard of in the past but when you’re unwell and that’s all you feel like then that’s ok. I had a good time with great company and above all escapism from the norm.

A relax in the garden before home

My partner and I have booked our next trip. We’ll be staying in a camping pod. More comfort than a tent, less space than a cottage but still all the freedoms. This could be an interesting escape.

Definitely watch this space.

Letting Loose

As soon as my partner told me we were going out for a meal with friends on Saturday night, I tried to stay calm. This is a good thing. Something to look forward to. Something I have been longing for. It was no good, my worrying mind dominated my thoughts. Since lockdown lifted, I had only met up with my family, drank mostly soft drinks and had early nights. This situation was different. People I hardly knew and who hardly knew me. Now my mind was racing. What will I drink? Will I be able to have a night of ‘normal’ drinking? What will be asked about my job? How should I reply? Should I prepare to say it’ll be an early night? Oh, wow I’ve never felt like this before. I visited each thought and tried to answer sensibly with solid replies that couldn’t allow for judgement to be cast. After all that was my main fear. I want to enjoy the night and have them enjoy my company too. After much pondering and churning over every scenario about the worst ways my body could fail me, and that an early night was inevitable. I give my head a shake. I sat up straight and told my self what will be will be. I am unwell and if I start to crash out, they will see I am unwell and then the worst thing is I’ll go home and sleep. That is really not that bad. So, I continued the rest of the week with my new determined mindset… I will have a good time.

The night soon arrived. I had a shower the previous night to conserve energy, applied a thick layer of deodorant, a smattering of make-up, my partner straightened my hair (I know, amazing right?), squirted some nice perfume and I was done. I was donning a nice, summery, new to me top. It was £6.50 from a charity shop and hardly worn, I love a bargain! I looked good, well alive at least and off we went. We had pre drinks at a pub before going to the restaurant. I had 2 halves…go me! And everything was feeling very smooth. There was a couple of times I had gaps in my conversation (brain fog not giving me the correct words I needed) but I don’t think they noticed. At least no-one mentioned anything so to me they hadn’t noticed.

I did have a couple of heart sunken moments when we met another group of people in the pub. The conversation turned to missing holidays and what people’s plans were for the rest of the summer. I went quiet and just commented on the places they were talking about. It seemed to gloss over the fact we don’t have such plans. A holiday abroad even the new, and aptly named, ‘staycation’ is too expensive, too tiring to plan, too tiring to navigate an airport and there’s the umpteen rules to get my head around. I’d sleep the rest of the time after getting through all of that. Still, it wasn’t too long before we left.

Next up was the restaurant. I had already looked at and mulled over the menu options at home, so that speeded up the reading process. We all ordered and after having a couple of beers I felt brave so ordered a large red wine with my meal. I mean push…the…boat…out, I am going for it here! It was such a good evening. Great food, great company. I slurred a few times but just made a joke of it and blamed the drink. Actually, it probably was the drink, I hadn’t drunk in some time. I still had a 2nd glass though. I was so proud of myself.

Steak and Mediterranean veg. Delicious.
(Pic by Piccolochorley.co.uk)

We finally had another drink back in the first pub. I was loving life, I felt normal. There was no asking how I was feeling, no asking about a job I don’t have, no asking about my illness in general. It was and felt like a ‘normal’ evening. I had such a night off from being with myself, I relaxed and enjoyed hearing other’s stories.

So, the night went well after all with lots of joking and laughing. It really gave me some escapism and a proper feel-good boost. I did start to fade more towards the end and it was only 11:30pm, so I’m not sure how much more I could have coped with. I’m just glad I got through it and I really appreciate the good people in my life. I suffered in the next few days but it was worth it. Well, it may be a while now but I know I can relax and look forward to the next night out.

I’m still smiling writing this blog. It just goes to show how a few hours of a good time, brings a joy that can last 10 times more.