Practical Solutions to Everyday Spoonie Problems


Having a chronic illness like ME/CFS or Fibromyalgia means everyday tasks can be challenging, exhausting and painful. But there are steps we can take to make life easier, to limit the stress caused and to conserve our energy for more enjoyable activities. Here are some practical solutions to everyday problems.

I’m too weak to lift everyday objects.

Some everyday objects like kettles, crockery and food containers can be too heavy to lift but you can replace them with lighter alternatives.

  • Kettle. Try using a ‘One Cup’ kettle. It only dispenses one cup of boiling water at a time. You don’t have to lift it, as the water is dispensed straight into the cup of your choice. It doesn’t take long to boil (about 90 secs) so you don’t have to stand for long.
  • Crockery. Try replacing traditional crockery and glassware with plastic alternatives. You can buy heat resistant plastic bowls, cups, plates and glasses. Picnic sets are a good option.
  • Heavy jars and food containers. Decant the contents into lighter and smaller plastic containers.

If you also struggle turning taps on and off, place a few plastic glasses in your bedroom and kitchen, which are prefilled with tap water by your carer or partner. Keeping hydrated is important for your health.

Don’t be afraid to ask for help.

I’m hypersensitive to everything.

A very challenging symptom of ME/CFS is hypersensitivity. Common sensitivities include noise, light, smells, chemicals, medication and certain foods. The following can help reduce the impact and pain caused by hypersensitivity.

  • Blackout blinds
  • Ear plugs
  • Sunglasses
  • Use Chemical free products
  • Use Unfragranced skincare and washing products.
  • Noise cancelling headphones
  • Remote controlled/dimmer light switch. This me I can control the brightness of the light in my room from my bed.
  • Different coloured bulbs/lighting.

    Everything is painful against my skin

When you have a painful condition like Fibromyalgia everything that touches your skin can cause pain. A few solutions I’ve found for this are:

  • Wear your clothes inside out because the seams cause pain. You can also buy seam free clothing.
  • Wear Strapless tops.
  • Avoid underwire bras
  • Choose your fabric carefully both for clothing and bedding.
  • Buy baggy clothing.
  • Avoid clothing with hoods e.g. hooded dressing gowns or hoodies.
  • Avoid heavy fabrics or clothing.
  • Cut your hair short. My long hair on the back of my neck and shoulders was causing me a lot of pain, so I cut it short. It may seem drastic but it made a big positive impact on my health and it will grow back. Scarves, hats and wigs are always an option when you have visitors, if you feel self conscious.

 Conversations are exhausting.

Holding conversations can be particularly challenging and exhausting, so why not try the following;

  • Limit time talking on the phone. Most things can be done online these days and it means you can do things in your own time.
  • Speak to friends about not calling. Instead you can converse online.
  • Code words for everyday tasks. When my ME/CFS is at its worst I struggle to speak at all. My husband and I have developed code words for simple tasks that need doing, so I only have to say one word rather than a sentence or two. It’s like our own private language.
  • Record instructions to carers or visitors in advance on a voice recorder. I frequently have new carers so I have recorded a list of instructions on my voice recorder so I don’t have to keep repeating myself, it also helps combat brain fog.
  • Compile a handbook with a list of tasks and instructions.

 

Brain fog

Even remembering the simplest tasks can seem impossible when you suffer from brain fog. Here are a few practical ways to combat this:

  • Calendar reminders. Use the calendar function on your mobile to set reminders.
  • Voice recorder. I record my thoughts, to do lists, emails I need to type, ideas for new blog posts, instructions to carers and much more on my voice recorder. I would be lost without it.
  • Pen and paper or post-it notes. If you don’t have a voice recorder these will do.
  • Routine. I find sticking to a strict routine is essential for combating brain fog.
  • Everything has its place. I always know where to go to find what I need e.g. medication. It’s important to stay organised.

 

Showering/bathing is exhausting.

People that suffer from ME/CFS are often too weak to get in and out of the bath, and showering can be very painful and exhausting. Try these tips to reduce the stress caused:

  • Only shower once a week. I know some people may find this disgusting but it takes me days to recover from a shower, so I don’t have an alternative. Wet wipes, panty liners and dry shampoo are a spoonies best friend.
  • Shower stool. Aids like shower stools and grab rails can make showering less exhausting.
  • Routine. Find a quick routine that works for you and stick to it.
  • Ask for help. Ask someone to run water for you. Ask someone to lay out your clothes and towel ready for when you get out.
  • Wall mounted shampoo and soap dispenser. You may not be able to lift heavy shampoo and shower gel bottles. A wall mounted dispenser is a good alternative.
  • Cut your hair short. It used to take me ages to wash and dry my very long, thick hair. It was exhausting and painful. I now have very short hair which times a minute to wash and I can leave it to air dry.
  • Keep wet wipes by your bed so your can freshen up when you need to.

 

I can’t prepare food or drinks myself.

One of the most frustrating obstacles I have to overcome is, I can’t prepare food or drinks for myself. I am lucky enough to have care workers that prepare my food for me, but I have to be able to feed myself when they are not about.

  • Snacks. Have a selection of snacks at easy reach of your bed or bedroom.
  • Cool bag. If you struggle walking to the fridge or opening the door because it’s too heavy, why not try using a cool bag. You can place it in your bedroom and access fresh food when you need it. My care workers prepare my lunch in the morning and put it in the cool bag along with an ice block.
  • Batch prepare food. Ask your partner, friend or family member to help you prepare food for the week.
  • Water cups. I have a few plastic glasses in my bedroom and kitchen which are filled with tap water by my care worker or husband because I struggle using the taps.
  • Coffee or tea and sugar already in cups.Thanks to the One Cup kettle I can prepare my own hot drinks when I’m alone but I struggle standing long enough to place the coffee granules and sugar in the cup. So my husband does this for me in advance and places a few cups by the kettle.

 

I have limited mobility.

There are many mobility aids you can use and adaptations that can be made to your surroundings. Don’t be too proud to use aids that will make your life easier.

    • Walking stick
    • Wheelchair
    • Walker
    • Neck and back brace
    • Perching Stools
    • Hospital/adjustable bed
    • Convert bathroom to a wet room
    • Grab rails
    • Riser recliner chairs
    • Reaching aids like Grabbers
    • Raised furniture

Please note: If you live in the UK and you’re disabled or have a long-term illness, you shouldn’t be charged VAT on products designed or adapted for your own personal or domestic use. For more information please follow this link:
https://www.gov.uk/financial-help-disabled/vat-relief

  • Anything I use regularly, I keep in easy reach of my bed e.g. medication, wet wipes or bottle of water.
  • Keep your mobile phone at easy reach. It can be used to text or call someone in an emergency or just to communicate with other people in your home e.g. if they are upstairs and you need assistance.
  • Plug appliances you use regularly into a remote controlled socket. That way you can turn them off from your bed.
  • Remote controlled light switch. I have one of these in my bedroom and it means I can dim and turn off my main light from my bed.

 

I’m always too hot or too cold.

I find it impossible to regulate my body temperature. Depending on how I feel on alternate between the following products:

  • Heated Throw
  • Rechargeable hand warmer
  • Ice packs
  • Electric fan
  • Cold wet flannels
  • Hot water bottles

 

I can’t answer the front door.

Sometimes we are not strong enough to walk to the front door to answer it. Here are a few solutions:

  • Install a Key safe for care workers, medical professionals, friends and family. The added bonus of a key safe is, if you have a bad fall and have to call on the emergency services they can enter your house without having to force the lock.
  • Install an Intercom system.
  • You can get basic Intercom systems where you can speak to visitors or more advanced ones which also include a camera. These are great for communicating with visitors without having to walk to the front door. You can turn unwanted visitors away without leaving your bed or direct wanted visitors to your key safe so they can let themselves in.
  • Keep your mobile phone at easy reach so you can call someone in an emergency.
  • Arrange parcels to be delivered to friends, family or neighbours or have a safe place where parcels can be left.
  • Arrange deliveries for when your partner, friends or family will be at home.

 

I’m bored. I have too much time to think.

When you are too exhausted to socialise or even watch TV, boredom can set in. Boredom can lead to an overactive or anxious mind. Why not try:

  • Reading
  • Audio books. For the times when even physically reading is too exhausting, audiobooks are a great alternative.
  • E-readers like Kindle are a great, lighter option to physical books. You can also adjust the text size if you have trouble focusing due to fatigue.
  • Listening to Music or the Radio.
  • Download free Podcasts
  • Mindfulness Meditation. Calms anxiety and is great for general well being. There are many apps you can download for free.
  • Social media. Interact with friends online. There are plenty of distractions on social media and there is always someone about 24/7 for the nights you are unable to sleep.
  • Colouring books. A good distraction and a way to practise your creativity.

Do you have any tips you would like to add?

#ajourneythroughthefog #chronicillness #ME #fibromyalgia #blog#invisibleillness

Is it time to take the plunge?

Three months ago today I took the plunge and started my own blog. It’s something I had been considering for a long time but I let my anxiety and lack of confidence get in the way of taking that scary first step. I’ve always been fearful of starting anything new. I’m a perfectionist and my fear of failure often stops me from even trying. But I will let you into a secret; most people aren’t good at something on the first attempt. It takes practice, experience and time to gain knowledge, but that’s the fun part. Don’t deny yourself something you may end up loving just because you might not be good at it. You don’t have to be good at something to enjoy it.

I’m not a writer. I lack the vocabulary skills to express myself eloquently. My brain fog causes an extra challenge and my good old anxiety does the predictable and rears its ugly head at every opportunity, but I’m learning so much. Up until 3 months ago I hadn’t written anything that could be considered an ‘article’ but I had a lot I wanted to say. I have a lot of experience and after years of frustration I finally have a voice, but I still doubt myself.

Here are some of the anxious thoughts and doubts that run through my mind on a regular basis:

  • Why would anyone want to hear about your life?
  • What makes you so special?
  • What makes you think you are qualified to advise others?
  • You will only f*ck it up!
  • You will make a fool of yourself!
  • You’re not a writer!
  • You haven’t got a clue what you are doing and everyone knows you’re a fraud!

Do these thoughts sound familiar?

So my urge to anyone considering starting a blog, who hasn’t mustered the courage yet is; Go for it! What have you got to lose? If I can do it, anyone can. The anxious doubts you have are completely natural but don’t let them stop you from pursuing your dreams. And if you are not quite ready to start your own blog, why not write a piece for mine? I welcome contributions from my followers. I know you have a lot to offer and I look forward to learning from your experiences.

PS. It doesn’t have to be just about writing. Is there a new hobby you have been wanting to try but are afraid you won’t be any good? Or maybe a new language you would like to learn, or have you been thinking about returning to college? Maybe your passion is travelling but you’ve lost your confidence. Fear of failure stops us from doing so much, please don’t be afraid to start something new.

What new hobby would you love to try? Have you started something new recently?

#ajourneythroughthefog
#blog
#anxiety
#mentalhealthawareness
#mentalhealthmatters