Crash

Crashing is what people in the M.E. community refer to when they experience a flare up of symptoms, usually quite significantly.

This is what a crash can look like: You become more hypersensitive to sound, light, touch, smells, even small amounts of sensory stimulation can be difficult even physically painful. Pain levels increase and energy levels decrease even more than usual. Muscles weaken, ache and spasm, you struggle to tolerate being sat up so you have to lay in bed, your immune system goes down and you experience cold and flu-like symptoms.

A crash can last a day, a few days, a week or two, or even months. Crashes are usually brought on by over exertion or an illness or such thing. Sometimes especially for those with severe M.E. even a small amount of ‘overdoing it’ can trigger a crash.

Living with M.E. is like walking on eggshells as I don’t know what will trigger a crash or when I will crash and when I do crash I don’t know how long I’ll crash for or how severe the crash will be. Sometimes I can predict a crash such as when I had my last surgery, when I was in the process of moving, when I leave the house, but I still don’t know the severity or length of my crash. Sometimes even just having a tidy up in my home and over exerting myself that way will lead to a minor crash lasting a day or two. Leaving the house definitely leads to a crash.

Sometimes I crash immediately afterwards like if I’ve overdone it on an activity and then I’ll spend the rest of the day and the next in bed with zero energy, in pain etc. Other times the crash can have a delayed onset, like it won’t hit me until the following day.

For me crashes are the hardest aspect of living with M.E. and they’re difficult for so many different reasons. The first few I’ve already mentioned: the heightening of my symptoms, the unpredictability in lots of ways. Also the emotions, like upset of the amount of pain and fatigue I’m in. FOMO: the Feeling Of Missing Out, frustration and regret wishing I hadn’t done what caused my crash but also frustration at my M.E. plus the isolation as well as grief. Then also there is the challenge of needing more support from my care team (PAs and carers) as I’m not able to do as much myself so there’s more reliance on their support taking away my independence and dignity. Finally with long term crashes there is always that worry and questioning ‘is this my new normal now?’ when the crash is no longer a crash but how things are for me from now on.

Living with Severe M.E.

It can be really difficult living with severe M.E., I spend so much time here in my bed, in my bedroom. I’ve found it important over the years to make my bedroom a lovely space to be in. Here are some of my tips I’ve found that have helped me cope with having M.E. in different ways. From making my bedroom a lovely space to just general ways of coping day-to-day - some things I plan to go into more detail in future blog posts  

Bring the outside world in

Whenever my family go on holiday they collect a selection of postcards for me. This allows me to experience different places around the UK and the world. I also love it when they send photos of places they’re visiting. 

Personalise your bed 

I find having my favourite bedding and washing it in my favourite laundry projects such a lovely thing. Having my favourite bedding gives my bedroom a touch of my personality and accessorising it with things like blankets just makes my bed a lovely place to spend time in. I also have my comfy body pillow - maybe you could add some cushions too. I also find having normal bedding on my profiling bed and medical mattress makes my bed look less clinical.

Use your imagination

Imagination can be such a powerful thing. On my worst days or when I have a migraine or I can’t tolerate any light or sound I turn to my imagination. I’ve been all around the world: to Central Park, the Blue Mountains in Australia, to the Costa Rican rainforest and to my own private beach in the Maldives.

If I can tolerate it I listen to soundscapes and let them aid my imagination to take me to different places.

I find my imagination relaxes me as well as distracting me from the increase of my symptoms that I get on my bad days.

Lighting

Lighting is a great way to create a lovely space in your bedroom. I love fairy lights and my sensory lighting. I have a Mathmos Space Projector as well as a mushroom lamp that offers different light modes such as a choice of colour, brightness and a colour changing mode; this lamp comes with a handy remote.

Smart lighting I find is really helpful on a practical level too as I can control my bedside lamp from my phone or with my voice. I can set it to different levels of brightness as well as the tone of the light colour.

Get green fingered

If you’re able to, in terms of letting light into your room and also able to look after plants having plants in your room can be another way of bringing a bit of the outside into your room. Plants like succulents and peace lilies and oxalis’ are very easy to look after.

Dealing with medical supplies in your bedroom 

Sometimes it can be hard to get the balance right when you have medical equipment and supplies in your bedroom. You don’t want your bedroom looking too clinical whilst at the same time having what you need and having supplies at hand and having the equipment you need to aid your independence and health.

For me I have a profiling bed and air mattress; I find having nice bedding on it makes it look a little less clinical and at the foot of the bed where the mattress motor is I’ve put a little bunting. I also have a Flexzi iPad stand and I chose pink so it adds a pop of colour. My over bed table doesn’t look out of place. I’ve seen people decorate their IV poles and I've also seen medical supplies cupboards with coloured accents or I’ve seen people use the three tier trollies for supplies. For me I keep what supplies I need at hand in one of my bedside drawers and in a box under my bed then the remaining supplies I’ve organised hidden away into draws in my wardrobe and in a large cupboard in my bathroom.

Sometimes though it’s inevitable that medical equipment from beds, IV poles, mobility aids, hoists and supplies having to be out for ease of access or simply because they can’t be moved out the way as they’re needed frequently or they fixed in place.

Aids, equipment & gadgets

It can be really helpful to get some gadgets in your room to make life a bit easier and to give you a bit more independence. 

One of my favourite gadgets is my Flexzi iPad holder it’s amazing for positioning my iPad whilst I’m reclined or laid in bed and I have to spend a lot of time like this in bed. 

Another really helpful item is my over bed tabled, part of the table tilts so it’s great for being able to do activities in bed. I’ve also clipped a rechargeable light onto my table too. An alternative is a a bed table; I have a lovely bamboo one that also has a portion that tilts or another option is just a simple lap tray, personally I prefer the ones that curve around you.

I also find my Dyson fan great for my room. I have the hot+cool fan so it’s perfect for all year round. I can control it from my phone or with voice commands or alternatively with the remote. Even though I live on my own it can be helpful to use the heater on my Dyson as it means I don’t have to get up to turn the thermostat up if I’m not able too. For me I struggle with dysautonomia so I find it hard to stay cool or warm up so it’s important to have my room cool/warm to manage my symptoms.

Audiobooks have been a lifeline for me

On my bad days or when I’m fatigued there’s little I can do. Audiobooks have become a lifeline for me and they help keep me occupied. They also aid my imagination and I love listening to a wide variety of genres.

If because of your disability you have a ‘print disability’ which includes those with physical disabilities who struggle to read books as a result such as holding the book or being able to cognitively concentrate or read print etc then you may be eligible for some of the free audiobook libraries such as RNIB and Listening Books - many local libraries now also have e-libraries with access to free audiobooks. I recently joined my local library on the recommendation by my best friend and I was able to join over the phone.

Activities 

Spending so much time in my bedroom and in my bed I’ve found it important to find ways to do activities I enjoy. These have mainly been low-level activities as it’s mostly what I can tolerate but I’ve found ways to be able to do more energy consuming activities too.

Some ways I’ve found the ability to do activities is from using my Flexzi iPad stand which I can mount my iPhone onto as well. My table which I mentioned above has also really enabled me to do activities whilst in bed too though sometimes I use my lap tray.

There are many activities that can easily be done from your bed: different crafts, activity books, reading, listening to audiobooks/podcasts/music/radio, watching television programs, gaming, writing, journaling, blogging, filming for social media - the list goes on and I will do a dedicated blog post on this topic at some point soon.

Feeling pretty

Sometimes when I’m feeling up to it putting on a bit of makeup can make me feel much brighter. I also like to dress up nicely too some days even though I’m not going anywhere or seeing anyone other than PAs/carers. Another thing I do is styling my hair or if there’s some free time getting my PA to curl my hair for me. I also like to spend time on my nails too, painting them and doing nail art.

Friendships

For me my friends remind me I’m not alone and that I’m not forgotten. My friends are people I can talk to about anything, good or bad. If either of us are having a difficult time or just to chat about our day, what books we’re listening to, to motivate one another, to have someone to confide in. Just simply being a friend. Oh and to exchange funny animal videos with - that friend if you’re reading this you know who you are!

Friendships are really important because of the isolation we live in. I don’t have any friends locally and for some people meeting with friends in person can only be brief or not possible due to the limits of their M.E. Technology really helps. I chat to my friends on WhatsApp, sometimes it’s typed messages with other friends we send voice messages; it’s whatever is easier for us to do but it keeps us connected. I also like to write to my friends too the old fashioned way through the mail.

Pen pals

Pen palling is something that really helps me. For me it gives me a connection to the outside world and to other people. I love reading about my pen pals and friends life’s and what they’ve been up to and writing back to them; it takes my mind off what I’m going through physically as I’m replying writing about what I’ve been up to such as what books I’m currently reading/listening to or discussing something with a pen pal such as the antics their pets get up to or their work or college course. I also feel like I’m talking to a friend when I write my mail replies too.

I also join in the Warrior Card Swap which is a monthly scheme where you send mail to someone and you receive mail back from someone else. I really enjoy this and if I’m ever having a bad month I can always opt out. Through this card swap I’ve made friends and found new pen pals.

I love displaying my mail on my notice board too. On there I put the cards, postcards and other bits I’m sent. Looking at my notice board reminds me of the kindness of the person writing to me and the quotes on there have a personal meaning to me. Again like my friends my notice board reminds me I’m not alone and that people are thinking of me.

6 tips for living with limited energy

Living with an energy limiting illness can be difficult in many different ways. Each person’s experience is different and you may experience additional symptoms. Also for some people they have more cognitive energy than physical energy or whilst others experience their energy levels the other way around. As well everyone experiences a varying severity in the limit in their energy levels, so these are just some general tips that I’ve found to be helpful that I want to share with you.

1. Learn to pace out your day

Pacing and activity management are going to be your best friend. The best way to visualise it is high level energy activities medium level activities and low level activities as well as rest. I find this traffic light system great as it’s visual but also it’s flexible as what can one day be a medium level activity on a different day can become a high level activity if your energy levels are more depleted.

I use this colour code system on a day planner, or on my to-do list or I use the traffic light pacing list pad* to plan my day. 

The key to pacing and with it being so visual I can see that if there’s a red task I’ve just done I know to follow it with either a green task or a rest period therefore I’m pacing myself and I’m not going to overdo it with my limited energy. I also know to limit the time I spend on a red task and when to do it in the day. If I do an orange task I know to follow it with a green task and then to rest and so on.

*from Stickman Communications © - they have some great pacing resources in their shop including a very user friendly little book all about pacing. I got this magnetic planner set from there too.

2. Do your most energy consuming activity at the time of day when you have the most energy 

Work out when in the day you have optimal energy. This is different for everyone for me it’s early afternoon but for others it’s in an evening. Use this time when you have the most energy to do your most energy consuming activity or activities for that day but try to limit it to only one or two activities so you don’t over spend your limited energy.

3. If you’re getting tired STOP and rest

This is something I’m always not the best at doing and I’m always trying to tell myself not to do anything if I’m feeling tired. It’s easier said than done!

If you’re noticing that you’re starting to feel fatigued either don’t start to do any activity and just rest instead or if you’re in the middle of an activity and you’re starting to tire just neatly pack up (you can pack away properly another time) and just leave to go rest. You’ll perform better when you’re not feeling absolutely exhausted and if you do any activity whilst feeling utterly fatigued you’ll only make yourself feel worse.

When you rest either do a really low-level activity or what I do when I need to just stop and rest is lay in bed and listen to a soundscape. 

4. Time your activities 

When doing a high or medium level activity work out your activity limit. This is different for everyone and may vary depending on what kind of a day you’re having. For me my activity limit is 20-30 minutes usually depending on the activity.

Once you know your activity limit which will be trial and error I find it helpful to set a timer for 20 or 30 minutes to ensure I don’t overdo it and over exert myself which might impact on my fatigue levels crashing. 

Another thing that I was told to do was on my to-do list put how long each task is going to task me to do, such as: put laundry on - 5 minutes, write to pen pal (my main activity for the day) - 30 minutes, call pharmacy - 10 minutes. By putting times on my to-do list it ensures I can fit in rest periods during the day as well as factoring the time it takes me to switch from doing the laundry to calling the pharmacy.

5. Use aids, equipment and gadgets etc.

Using aids, equipment or gadgets can help share the task and help reduce fatigue or help you keep going for longer and allow you to do more.

There is so so so much out there depending on your, your medical condition and your needs. From gadgets and pieces of equipment to use around your home through to mobility aids. A few examples could be using a shower stool to reduce fatigue when showering, I have many kitchen gadgets that help me save energy like my hands free tin opener, also different mobility aids from walking sticks to rollators to wheelchairs can help reduce fatigue - if you’re unsure about mobility aids speak with an Occupational Therapist or physiotherapist for advice on what is best for you.

6. Don’t be afraid to ask for help

Asking for help isn’t a sign of weakness, it’s actually a sign of strength. This could be asking for help from a family member, friend or even a professional.

It could be asking someone to help you change the sheets on your bedding to reduce your fatigue, or asking for someone to make your lunch for you, or a family member to wash your hair or to employ or ask social services for help and have a PA/carer to help you out. Other things could be to get a cleaner or dog walker or even if you have children give them school meals to save your energy on making packed lunches.

‘I love your wheels’ - International Wheelchair Day

When I go out I aways smile when I hear ‘I love your wheels’. 

In the UK there are 1.2 million wheelchair users and around 1 in 3 of them like me are ambulatory wheelchair users. Being an ambulatory wheelchair user means that I can walk/stand without the use of a wheelchair; in place of my chair I use crutches, but I still need the aid of a wheelchair in certain situations such as when I leave the house as my walking ability is limited; as well my mobility ability can fluctuate. Alongside this I’m much safer in my wheelchair and sitting in my chair it reduces my pain and fatigue levels and allows me to do more than what I can manage to do on two legs.

I feel proud to be a wheelchair user; what has helped me accept my wheelchair over the years is accessorising it so my chair represents ‘me’ hence why I love it when people comment on how I’ve accessorised my wheelchair as I feel that in that comment they see me and not my chair. Some accessories are purely decorative like my Izzy Wheels spoke covers others are ‘pretty and practical’ like my push rim covers, my FFORA bags and cup holder and other bags I have on my chair plus my Bundle Bean wheelchair cosy and also my new Flexzi phone holder. (Yes there’s a lot that I’ve added to my chair I know!) Here is a video on how I’ve accessorised my wheelchair.

Advice I’d give

To those who haven’t yet started to use a wheelchair 

If you’re struggling with your mobility and you think a wheelchair might help you speak with your GP, consultant, Occupational Therapist or Physiotherapist. This is what I did, I asked my neurologist if he thought a wheelchair would be helpful to me and he thought one would so he referred me to Wheelchair Services and I was provided with a manual self-propelled wheelchair. 

I’m grateful that I have a wheelchair on the NHS; it does the job though I would someday like to get an ‘active’ wheelchair that is more lightweight with the customisations that would better meet my needs as well as having an electric add-on for my chair but these can all come at a high cost which I can’t justify just yet and my current wheelchair is just about doing the job.

Getting a wheelchair

My advice is to try the NHS Wheelchair Services first; you may get a wheelchair through them. Alternative you may be eligible for a voucher to put towards purchasing your own wheelchair instead of having an NHS provided wheelchair.

If this option isn’t available to you think about your budget and whether you want a manual or electric wheelchair or even a mobility scooter. There are lots of options out there, read and watch different reviews on different chairs and look at different wheelchair users on social media to see what chair they use to narrow down your choices. Contact different mobility dealers and try out different chairs to see which one you like the best take them apart to get the feel of how easy they are to assemble and resemble and feel the weight of the chair too including the battery if it’s an electric wheelchair. If you’re thinking of a manual chair look at all the customisation options (including prices) and what custom options you might need like a high backed seat or height adjustable handles if you need someone to push you. Think about the weight of the chair; how are you going to transport it? such as how it comes apart to put it into the boot or will you get a Wheelchair Accessible Vehicle? Think about how often you will be using the wheelchair, will you be just using it outdoors occasionally or all the time or indoors too? Think about how you will get on and off the chair. With a manual wheelchair think about what seat cushion you’ll need to get. Will you get an electric add-on for your manual wheelchair. Consider the battery life on electric wheelchairs and how far you can travel on it. These are just a few of many things to consider so do your research.

Adapting to first using a wheelchair 

Like I mentioned above accessorising and personalising my wheelchair has helped me make my wheelchair more ‘me’. I didn’t immediately do this overnight the adaptations have just come over time but it is something I’d recommend doing if you’d like to and your wheelchair allows you to personalise it.

There are definitely some helpful things to have. I’d say my FFORA bags and cup holder are really handy to have, plus my push rim covers (I learnt to pop my first wheelie the other day because of them!) and also my Bundle Bean.

It can be daunting when you first start to use a wheelchair especially out in public, there’s lots of things to get used to such as wheelchair accessibility and navigating around in your chair as well as maybe the public’s attention on a wheelchair user. Thankfully I’ve never had any negative experiences especially as an ambulatory wheelchair user.

If you’re self-propelling your chair one thing to get right is the rhythm of pushing your chair so you don’t tire your arms out. This is a fab video from Gem at WheelsNoHeels on her YouTube channel showing how to correctly propel and push yourself in a wheelchair as well as how to pop a little wheelie. Gem has lots of helpful videos like this on her channel so I’d definitely recommend checking her out.

My advice is when you first start to go out in your wheelchair I’d take someone along with, just for support or to take over pushing your chair if you get tired, to help you get it in/out the car or to negotiate public transport, or for those ‘just in case emergencies’ like your electric wheelchair battery running out of juice.

Another thing to consider is parking. If you’re eligible it will be worth applying for a disabled parking badge. This will make going out in your wheelchair much easier as you’ll be closer to where you need to be and you’ll have the additional space to get you’re wheelchair out the car and also to get in/out your wheelchair.

Some of my recommended accessories

• FFORA - an attachment system for manual wheelchairs which you can attach a FFORA bag or cup holder onto, there are a variety of bags to choose from the attachment system comes in different colours as does the cup holder. Here is a blog post review on my FFORA products I also have this review video and this video showing you this interior of each of FFORA’s bag designs. The bags also come with cross body straps so great if your cup holder is in use or you just want to wear your bag as an ordinary cross body bag
  
• Izzy Wheels - spoke covers for manual self-propelled wheelchairs 
  
• Bundle Bean - Wheelchair range - wheelchair cosies, organisers, spoke covers, ponchos etc. in a wide variety of designs 
  
• Push rim covers - these are the ones I have and would recommend and they come in different colours 
  
• MERU Flexzi phone mount - this is just a gadget I use when needed, it comes in different colour options, depending on your needs it might be something that is helpful to you
  
• Pickepacke bags - I like my Pickepacke bag as it’s behind my legs so the contents are easy to reach plus they’re more secure than having them on the back of my chair 
  
• Mobility clips - these can convert your handbag to allow you to hang it on the back of your chair