anxiety, chronic fatigue syndrome, chronic illness, Fibromyalgia, myalgic encephalomyelitis, Uncategorized

The Fear – The anxiety faced by many with chronic illness.

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Photo by Pixabay on Pexels.com

The Fear. The anxious, stomach churning, paranoia riddled feeling deep inside when you feel that something is about to go wrong. You feel sick, you’re sweating and there’s an impending sense of doom.

You’ve felt it right? I think we all have at some point. I certainly have done having had anxiety most of my adult life and I know I’m not alone.

But, the fear I want to talk about, is slightly different. It’s the fear of a flare up, or Flare Fear. It’s even the fear of good days.

‘What the heck is she on about?’, I hear you say. Let me explain.

So, I have ME/CFS and Fibromyalgia. Both are very debilitating, painful, exhausting illnesses to have. When ‘flare-ups’ happen, there’s little to nothing I can do but ride it out, put my life on hold and wait for the symptoms to fade. This could be days, weeks or even months later. Sufferers spend days in bed too exhausted to lift our heads off the pillow, lights and sounds triggering sensory sensitivities, every single part of the body aching like we have a hangover and the flu at the same time, joint pain and brain fog so thick we can’t remember anything, can’t coordinate our bodies to walk straight and generally feel like poop.

Sounds awful doesn’t it? Welcome to my life during a flare up.

So, understandably, when these awful flare up’s finally start to lift, and the good days start to increase and then eventually outnumber the bad ones, it feels amazing to feel ‘normal’ again. I say ‘normal’ as even when I’m not in flare up, I’m still tired and in pain everyday, just at a more manageable level. Probably how someone who isn’t ill feels is on a ‘bad day’.

Anyway, it feels fantastic to finally be out of a flare up and to start actually leaving the house and having a life. I sometime have very short periods where I feel well for a week, and then go right back into flare ups, but occasionally, I’m granted with magical spells of a few months where I feel almost like my old self again.

I usually feel fantastic for a few months, live life as much as I can and then BAM! The Fear hits me. It taps me on the shoulder, slaps me right across the face and says;

Oh hi, you look like you’re having a nice time.  Remember the pain, the exhaustion, the brain fog that makes you forgetful? Well what if it was to come back tomorrow?! Wouldn’t that just be a kick in the teeth?’

Yes. Yes it would. The Fear takes hold of me and I stop enjoying being ‘well’ as much as I should, as much as I deserve to. In the back of my mind, I’m always wondering if today is the last day I’ll feel well for months. Always wondering if I’ll wake up the next morning in agony and too tired to get out of bed. Or being anxious that I won’t make it to that birthday party/wedding/*insert other random important function here*, in a weeks’ time.

It’s absolutely awful. I get to feel well enough to go out and have a bit of a life, feel physically better than I have been, but then I get a nice helping of anxiety, fearing for the day the symptoms of doom come back! It just doesn’t seem fair.

The Fear can even strike whilst in flare ups, when you fear your symptoms worsening when you have to do something you know will make you feel worse because you have no choice. Going to see family, a Dr’s appointment, food shopping. When you already feel ill, knowing something you must do is going to make you feel worse is like a form of torture so the fear and dread takes over. And it’s all a vicious circle too, as the anxiety can flare up symptoms too!

Recognising what triggers your flare ups and symptoms can help with some of the fear and allow you to avoid some of them. Emotional stress, exercise, viruses and certain foods are some of mine, but I also have them out of the blue with no cause I can think of. Even when you do know your triggers, they can’t always be avoided, like getting sick with a virus or something sad happening in life that understandably makes you emotional.

A few things that can help you to deal with The Fear are:

  • Pacing – take things slowly, plan how much energy you need for tasks.
  • Mindfulness – Focus your attention on the present.
  • Distraction – Keep your mind active with reading, crafting etc
  • Plan – If you know certain things trigger you, be as prepared as possible to deal with them.
  • Support – Tell your friends and family how you are feeling so they can help you.

What do you do to help you get through The Fear?

 

 

 

 

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brain fog, chronic pain, Fibromyalgia, invisible illness, myalgic encephalomyelitis

Life in the slow lane: From life in the fast lane, to life with chronic illness.

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Hi everyone,

I was recently lucky enough to be asked by Julie over at Counting my Spoons to write a guest blog.

I decided to write about something close to my heart, so I wrote about the experience of going from living a busy, full and fast paced life, to suddenly becoming chronically ill and having to adapt to the huge changes it brings to your life.

I talk about my own experiences and also give some tips on how to deal with with the changes.

Pop over to Counting my Spoons and see what you think to it;  Life in the slow lane: Life in the fast lane to life with chronic illness

If you haven’t read anything on Counting my spoons before, I can highly recommend it.

Julie Ryan the owner has lives with chronic illness, she has TMJ, Fibromyalgia, Endometriosis, thyroid issues, cluster headaches and chronic migraines.

Her blog is so informative for anyone with chronic illness so it’s definitely worth visiting and subscribing.

 

xxX Sam Xxx

chronic illness, Monthly roundup

Goodbye June, Hello July!

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Another month done,  July is here! I have some very exciting news and plans for July that I’ll tell you in the blog! This year is going by crazily fast! Here is my round up of how my June went.

In my last monthly roundup, I set out some plans for June. Some I’ve done, others I haven’t. I’m totally fine with this. I used to beat myself up when I made plans and didn’t achieve them, but I have been working very hard on not doing this over the last year. Chronic illness and strict plans do not go hand in hand! I still love to plan and feel organised but I just don’t put pressure on my self if I don’t achieve everything.

My plans for June were:

  • More Sunshine: I challenged myself to get out of the house every day, even for a few minutes in the garden to get fresh air and a change of scenery. I managed to do this every single day in June! A lot of days it was me sitting on the bench for 5 minutes in my PJ’s watching my dog, but some days I have sat out and read, relaxed and chatted with my hubby.
  • Month of Mindfulness: I started my Month of Mindfulness jar but after about a week, when I felt really ill and didn’t do much other than exist, brain fog crept in and I literally forgot I was doing it! I was really enjoying picking and reading a little prompt every morning and think its such an amazing idea so I’m definitely going to try again.
  • Bullet Journal: I wanted to start a bullet journal and I have kind of achieved this! I have bought some supplies and started it, but it was hurting my hands trying to make it look pretty!
  • Be kind: I wanted to create something to use as random acts of kindness, like the painted rocks that people all over the world are leaving with messages of hope. I decided to make some pocket comforters with little messages sewn on them….and again, my hands hurt so much trying to make them so I had to stop. This will be an ongoing project!

So, onto other news and things that have happened in June! Some of these are super exciting!

  • Temp job: I have been invited back to do a temporary job in Sept until December doing the nasal flu vaccine programme in my city. I did it last year and although I had to leave a couple of weeks before it finished due to a flare up, I managed it fairly well. This is a weight off my mind a I know I will have some pennies for Christmas and for the birth of my first niece or nephew in November 🙂
  • The Mighty: I have been made an Official Contributor on The Mighty! I’m so excited about this as I have followed The Mighty and read and shared the articles pretty much everyday for the last 4 or 5 years! The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. I submitted a couple of my blog articles to them and I was shocked to get an email back the very next day offering to publish one of them and the offer for me to be an official contributor for them!
  • Counting my Spoons: This month I will be featuring as a guest blogger on Julie Ryan’s amazing website, Counting my Spoons. Julie has Fibromyalgia, Endometriosis, Hypothyroidism, TMJ, Migraines, and Cluster Headaches and she blogs about her experiences ad writes about chronic illness in general. Go and visit her site, its fantastic and has so many helpful resources.

My plans for July are to:

  • Self Care: Work at practising self care everyday, even on the bad days
  • Write: I want to put more time into writing this month and get stuck into some articles for The Mighty.
  • Be Kind: I will try to create something lovely I can leave for people with a message of kindness this month as I didn’t manage it last month.
  • Read: I adore reading, and have been reading loads this year but in June I barely read at all. So I’m challenging myself to finish the book I started towards the end of May, and to read at least another one aswell.

I hope you all have a fantastic July whatever you are up to. Let me know your plans in the comments.

xxX Sam Xxx

 

 

brain fog, chronic illness, poetry

My Sensory Frazzled Brain

Sensory overload brain fog

Today’s post is a little different to my usual ones. I’d like to share a poem with you all that I wrote after a difficult trip to the shop’s whilst struggling with one of my most dreaded symptoms of my chronic illnesses – Sensory impairment, sensory overload or cognitive impairment.

One of the best quote’s I’ve seen being shared recently that I can relate to it is: 

My Brain has too many tabs open.

I hate the total lack of control over it, and how it makes me feel stupid. I hate the feeling where you can’t focus on more than one thing at once or you feel that your head will literally explode. But at the same time you are seeing, hearing, smelling and thinking a million things all at once. It’s always hard to explain to people just what it feels like to be having an issue with cognitive impairment, so I tried to capture how I felt in this poem. 

I hope you like it and that some of you can relate to it and maybe pass it onto friends and family to help explain to them how it feels.

xxX Sam Xxx

 

My Sensory Frazzled Brain

I leave the comfort of home, Not through want, but through need.  

Running errands, buying food, so that we can feed. 

I close the door behind me, my safe place left behind. 

I step into the outside world and suddenly I go blind. 

 

The sunlight hits me in the eyes and my legs begin to shake. 

The noise of all the traffic, is more than my brain can take. 

Welcome to sensory overload, its all thanks to M.E 

A surge of jumbled senses, too much for my body.   

 

I stumble down the street, vision blurred, my balance flawed. 

I finally make it to the shops, brain still frozen, not yet thawed. 

I hesitate a moment, before I walk on in, 

A few peaceful seconds, before the awful din. 

 

The lights immediately blinding, the colours merge into one,  

The mingled conversations are as deafening as a bomb. 

The brightness makes me dizzy, and nausea soon creeps in, 

The sounds, the smells, the chaos, shake my brain from deep within. 

 

I feel like people are staring, as I misstep through the aisles,  

My heart is pounding so fast, and I notice awkward smiles. 

Do they think I’m weird, I’m odd or even on the drink? 

Their pity makes me want to run, to hide away and shrink. 

I focus on my shopping, I try to read my list,  

But my brain struggles to see words, they are covered in a mist. 

I meander to the check out, Stand in the usual line, 

I stand and try to focus, swaying all the time. 

 

The woman behind the counter utters words I haven’t heard,  

My brain splicing them with other sounds, making it all blurred. 

I struggle with the packing, dropping things as I go, 

I hear another in the line complaining I’m too slow. 

 

I fumble with my money, I drop it on the floor,  

I feel stupid and embarrassed as I limp towards the door. 

Tears appear and sting my eyes, I feel useless, pathetic, mad,  

Why does life have to be this way? So difficult and so sad. 

 

There are many others like me, struggling day to day. 

Each and every one of us, praying it will go away. 

Next time you see me struggling, please try not to stare,  

You don’t realise what I’m going through, or how hard it is to bare. 

brain fog, chronic fatigue syndrome, chronic illness, Fibromyalgia

Brain Fog 

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You may have seen the term ‘Brain fog’ being shared to describe symptoms people with Chronic illness have, but do you know exactly what it is?

Brain fog, sometimes called ‘Brain fatigue’, ‘Fibro Fog’ and ‘Chemo fog’, isn’t actually a medical term, but it basically describes symptoms of cognitive difficulty/dysfunction such as; poor concentration, forgetfulness, lack of clarity, losing focus etc.

I have ME/CFS and Fibromyalgia, and these are renowned for being illnesses where brain fog is a symptom. I also have a Hereditary Haemochromatosis and chronic Vitamin D deficiency which also cause brain fog. So basically, I’m a professional at getting my words muddled up and standing in a room looking confused as I can’t remember why I walked in.

The word ‘fog’ describes the way it feels perfectly. I sometimes write poetry as a kind of therapy for myself, to get how my illness makes me feel out of my head and onto paper and I wrote a line in one of my poems that I think, for me really describes exactly how ‘brain fog’ feels;

‘’My head is fogged, my thoughts trapped in treacle, unable to emerge.’’

If you don’t know how it feels to have brain fog, imagine that your head is filled with nothing but cotton wool, everything in front of you is foggy, you can’t think, you can’t remember what you want to say, what you were about to do. It’s awful, horrible and unbelievably frustrating.

As someone with ME/CFS and Fibromyalgia amongst other health problems, I can honestly say that Brain fog is one of my most difficult symptoms to deal with. I regularly find myself telling someone that ‘I can deal with the pain and exhaustion to an extent, but I can’t stand having brain fog’.

Sometimes I wake up with brain fog, other times it creeps up on me, or sometimes it just appears out of nowhere. For example recently, I had a day where I was feeling pretty clear headed, I went for a rare lunch out with a friend. When I started eating, I felt fine and by the time we finished eating, I was exhausted, couldn’t concentrate and couldn’t find the words I wanted to say or was saying the wrong word’s. Luckily my friend is fab and totally understands and knew what was wrong, but in other circumstances, or around strangers, it can be really embarrassing.

I’ve always been an intelligent, knowledgeable and articulate person and I hate the way that brain fog makes me feel so stupid. I HATE feeling stupid.

I’d probably have trouble convincing some people I even know how to spell my own name sometimes. It frustrates the hell out of me and I have a tough time convincing myself that it doesn’t mean I’m stupid, it just means that my whole body, including my brain is fatigued and running on empty and I need to rest it.

The memory effects can be pretty bad. I forget so many things when I’m fogged, ranging from small things to things that are pretty important like not burning the entire house down when I leave the cooker on. (One of my regular forgetful things to do)

Some of the things I’ve done due to brain fog, most of which are a VERY regular occurrence and mean I need supervising, especially in the kitchen, include;

  • Forgetting my age (Yes really!)
  • Leaving the keys outside the door
  • Writing so many typo’s my friends & family can’t read my texts. (Some have now learnt Sam Fog, my own language!)
  • Leaving the door open
  • Leaving the fridge wide open
  • Leaving the hob/oven etc on after cooking
  • Taking things out of the oven with my bare hands
  • Catching a burning hot wok with my bare hands
  • Saying random words or muddling things up like the other day; ‘Taxle House’ instead of ‘Council Tax!’.
  • *TMI – Forgetting I’m on my period when I wake up and not knowing if I have a tampon in (How dangerous!)
  • Trying to catch knives when I drop them!
  • Forgetting that things straight out of the oven are hot and picking up, leaning on etc burning myself. (I’m covered in scars)
  • Forgetting appointments, meeting friends etc
  • Forgetting if I have taken medication
  • Forgetting to pay bills
  • Forgetting to order medication
  • Leaving my car unlocked
  • Totally forgetting where my car is parked
  • Forgetting to do something I promised to do for someone
  • Forgetting I’m running a bath (Which resulted in flooding and a new ceiling before we got a new bath with an overflow!)

I could go on, and on and on. Luckily for you I wont! I can laugh about some of them, I’d cry if I didn’t, but some of them are pretty awful and really upset me at the time. Others leave my husband hysterically laughing at me and give us something to laugh about later. We even have a phrase of ‘Going full Sam’, to describe me at the peak of brain fog and confusion!

But, getting frustrated with yourself only makes the symptoms worse so the best thing to try and do, is just breathe, relax and try again.

There is literally nothing I can do at the time so I’m learning to just relax and not get too wound up with it as it won’t help or might make it worse wasting my precious energy on worrying.

So, as frustrating and debilitating as Brain Fog is, try to find your own way of dealing with it. Mine is to laugh about it, which may or may not work for others, but I find it helps me.

Wishing you all a fog free day!

xxX Sam Xxx

 

 

 

 

 

 

 

 

 

chronic fatigue syndrome, chronic illness, Fibromyalgia, Travel

Travelling long haul with a Chronic Illness

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 Going on holiday can do us the world of good. We can de-stress, relax and unwind for a week or two in some far flung destination and forget about our troubles. 

But what happens if you want to travel and you have a chronic illness? How will you manage with the stress of getting to the airport, checking in and then the flight itself? 

I have been lucky enough to travel to some amazing places, most before I became ill, and have flown long haul quite a lot. Last year, I had the opportunity to travel to Vancouver in Canada for two and half weeks with a visit to Seattle in the USA thrown in too. I live in the UK so the flight would be roughly 10 hours long. I was beyond excited but also pretty scared at how I would manage my ME/CFS, Fibro and Scoliosis symptoms as it would be my first long haul flight since I became ill in 2013. I had done a couple of city breaks in Europe with much shorter flights which were tiring enough so I was a little nervous. 

My husband is very supportive and understanding of my illnesses, and we knew we needed to plan this trip a little more carefully than previous ones. My biggest tip is to plan, plan, plan. Don’t leave anything to chance, don’t think to yourself  ‘I’ll manage’ or ‘I might be ok on the day’ because chronic illness is very unpredictable so always be prepared for the worst. 

Here are my tips for planning and going on your travels: 

Booking 

  • Booking flight times that don’t mean waking too early/staying up late if possible 
  • Book most comfortable seats u can in advance 
  • More than 1 flight needed? Break journey up with overnight stay in airport hotel 
  • Travel insurance 
  • Check if your meds are allowed in the destination you want to visit 
  • Buy a Travel wallet, make lists, print off itineraries 
  • Try to organise a taxi or for a friend/family member to take you to the airport 

Day of travel 

  • Medication and Drs note/prescription in your hand luggage 
  • Hand luggage – Make it comfy & easy to carry [Wheels, back pack, nothing 1 sided] 
  • Journey to airport  – Rest/sleep if not driving 
  • Arrive in plenty of time – Avoid anxiety and rushing/over-exerting yourself if rushing 
  • Airport lounge access for more comfort 
  • Plan for delays: Medication, snacks, inflatable pillows, things to make you comfortable if you have to sit around longer than you planned. 

Flight 

  • Flight – inflatable pillows, blankets, slippers/comfy socks, eye mask and earplugs 
  • Drink plenty of water, avoid too much alcohol 
  • Take plenty of things to keep your mind occupied and off your pain like books, colouring books, relaxation music 
  • Wear loose fitting, comfy clothes. 

Hotel 

  • Book something central to the places you want to visit 
  • Organise early check in and late check out in advance so you can drop off your bags and rest sooner on arrival and get more rest before leaving. 
  • Check with the hotel and on review sites which rooms are the quietist and likely to be more restful 
  • Book a ground floor room or check elevator’s are available if you struggle with walking 
  • Book a room on an upper floor if the hotel is in a busy area to limit noise  
  • Ask for extra pillows, blankets etc in advance to make yourself more comfortable 

Misc 

  • Alternate busy days with rest days 
  • Don’t overdo it on your first day with the excitement of being somewhere new
  • If you’re staying in more than one location, factor in plenty of down time before each journey 
  • Don’t overdo it on ‘good days’ no matter how tempting it is to cram things in. 
  • Work out where local Drs and Hospitals are before you travel 
  • Work out when to take your medication without altering it too much from your usual routine 

 

The tips I’ve given above all made big differences to my long-haul travel experience from the UK to Vancouver, Canada last year.  

We broke our journey up by travelling from Manchester Airport, down to Heathrow and spending a night in Yotel Heathrow to give me plenty of rest before our 10 hour direct flight from London to Vancouver. This way we literally woke up, had breakfast and then made our way to our terminal and waited for our flight without the worry of travelling there etc.  

Doing a twin centre trip was daunting, but again, planning ahead helped. We travelled down into the USA to Seattle as its pretty close to the Canadian border. 

Instead of flying and us having to spend more time travelling to the airport, wait around for hours, fly, clear security etc, we went via coach. It literally picked us up outside where we were staying, was spacious and very comfortable compared to a plane, the US border checks were much speedier than in an airport and before we knew it, we were there! Much less stress. 

I didn’t get it all right, I made mistakes but they will help me on my next trip. For example, we woke up in the penthouse apartment my hubby’s cousin was staying in on that first day, immediately fell in love with the city views, the mountains and the excitement of exploring a new city, and instead of pacing myself, I threw myself into exploring. I did far too much that first day and the next day I really paid for it. So, while my hubby and the family went out for a stroll to a local beach, I laid in the bath for a few hours soaking my aching bones, and then I sat on the rooftop terrace relaxing before having a nap. So, I missed the day’s activities due to overdoing it that first day. 

Another mistake was driving to the airport. We drove to our local airport which was easy enough at the time, but on the way home, after being awake close to 24 hours, driving home was NOT fun at all. In hindsight, I wish we had booked a hotel before going home or got a lift to and from the airport. 

Travelling with an illness like Chronic Fatigue Syndrome/M.E, Fibromyalgia etc, is possible. It just takes more planning than it would for someone who isn’t ill. 

The benefits of travel, for me far outweigh the reasons for not travelling and it’s not something I’m, willing to give up.  

Yes, its blooming hard work some days, and I always worry in the days before about how I’ll feel on the day of travel, but getting to discover another piece of the world is the reward for me and its always been my dream to travel. 

Just plan, plan, plan and work out what is best for your particular health condition and travelling can be an amazing experience. 

Bon Voyage! 

XxX Sam Xxx 

 

anxiety, chronic illness, depression, eating disorder, health

Why you need to stop telling yourself ‘It could be worse’. 

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We’ve all done this at some point. We say it because we genuinely mean it. We say it to show people that we aren’t drowning in our own sorrows, we say it to try and show people that we aren’t ungrateful and we say it to try and convince ourselves that its true when we feel at rock bottom.

But why? Why can’t we just be in the moment, realise that we are suffering, struggling and that it’s ok to feel like it’s the worst thing that’s ever happened to us?

What good does it do to compare yourself to someone who might have a bigger problem than you? It takes away from what you are going through and it makes you feel guilty for allowing yourself to feel sad about your situation.

We need to stop doing it right now! We are always being told not to compare ourselves to each other in other area’s in our lives and that should count for the tough times too.

Just because you know someone who is going through a tough time, with a problem deemed bigger or worse than yours, does not mean you have to suddenly stop feeling hideous and pretend nothing is happening to you.

I used to be the worst culprit for saying ‘It could be worse’ or saying ‘Well my friend is going through bla, bla, bla and my problem is nothing compared to that’.

It was like I wasn’t allowing myself to realise how awful and how hard my situation was, just because someone else also had it tough. And that stopped me from owning my situation and being able to deal with it and heal.

The day I realised it was ok to stop doing this was the day I was in therapy for a long standing eating disorder. I had been Bulimic for exactly half of my life at that point, 13 years. I had finally decided to get help once and for all, but I had been going to my sessions for months and kept stalling in my progress. I kept telling her that there were millions of people worse off than me and that I should be able to stop feeling the way I did and move on.  I literally didn’t feel worthy enough to be allowed to suffer and feel the pain of it all properly.

My therapist told me that day;

‘You know, you can keep telling yourself that others are worse off than you, but until you realise that its ok to feel your suffering, to realise that this is the worst thing in YOUR life right now, you will never be able to move passed this and recover’.

It made me really think about what she meant and it totally made sense. Yes, somebody I knew was going through hell with an issue in their life, but so was I. Just in a different way. That was the worst thing going on in her life at that moment, and this was the worst thing going on in mine. And I finally realised, that it was ok to feel sad, to feel annoyed that this was going on in my life, to feel everything. It was happening to me no matter what was happening to others and I needed to feel everything, allow myself to own my suffering and then begin to heal.

When I allowed myself to do that, it changed my life.

I tell anyone I know the very same thing my therapist told me when they utter the words ‘It could be worse’, and now I’m telling whoever reads this.

Try it, tell yourself its ok to feel the way you do. Once you realise that right now, it’s the worst thing happening in your life, nobody else’s, you can come to terms with whatever the issue is. Once you stop comparing how ‘big’ or ‘serious’ your problem is to other peoples, you will be able to feel so much more at peace and allow yourself the room to deal with whatever the problem is.

Do it today!