Jo Moss

@jo-moss | contributor
I am a 44 year old woman who has battled with ill health all her life. I have Fibromyalgia, severe ME/CFS, depression and anxiety. I use my blog ‘A Journey through the Fog’ to try to reach out to others that are suffering too and also to raise awareness of invisible illnesses. I write about all aspects of my health and try to give practical advice about coping with a chronic illness, based on my own experiences.
Jo Moss
Jo Moss @jo-moss
contributor

Chronic Illness and Friendships

There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on our lives. When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. Formerly dear friends disappeared as I became increasingly unable to make or keep plans. But supportive friendships are vital for us spoonies. I felt like a burden to my friends. When I first became ill, I felt like a burden to my friends. I went from a happy-go-lucky healthy person, the life and soul of the party, to someone unable to socialize or even communicate at times. It’s extremely hard to adapt to living with a chronic illness. I often feel like a stranger in my own body, and at times I feel like I don’t even know myself. So it’s not surprising that my friends found it hard to adapt, too. The truth is, I’m not an easy person to be friends with; I cancel plans at the last minute, I can no longer do a lot of fun stuff I used to do, I may talk about my illness a lot and I may need more reassurance than most. And because of this, my confidence and self-worth took a big knock, and I found myself trying to justify their friendship. What could I offer to them now? Who would want to be friends with someone like me? But for those of you blessed with “good” health, I have a little secret to tell you: spoonies make excellent friends. We are caring and compassionate, understanding, loyal, appreciative, empathetic and often have a wicked sense of humor – how else do you think we survive living with chronic ill-health? It took me a long time to realize this, but I’m starting to know my worth rather than feeling like a burden. I am a good friend despite the challenges my chronic illness may bring. I deserve happiness, respect, love and friendship. Friendships for people with severe forms of chronic illness are not always easy. Our friends may find it hard to understand that we are too ill for them to visit or talk to. The severity of our symptoms may scare them. Sometimes our friends just don’t know how to act around us when we are ill. So it’s partly our responsibility to educate our friends and family, too. Anyone living with a chronic illness knows the ongoing uncertainty about how we will feel each day makes planning almost impossible – it has a huge impact on our lives. Not only is it hard to plan ahead, but we may also often have to cancel plans at the last minute. Not everyone understands this. Some people don’t get the damage chronic pain and illness can do to not only our physical health, but our mental, too. Although it’s almost impossible to plan ahead when you have a chronic illness, this doesn’t stop me from trying. But it is important that I’m flexible with my goals and plans, and it’s even more important that my friends understand this, too. I am lucky enough to have two very good friends who completely understand. They will even text me the morning before a planned visit just to make sure I am still well enough. And they do not judge me if I have to cancel at the last minute. This means the world to me. But over time, other friendships have fallen to the wayside as a result of my chronic illness. Please remember: we may seem unreliable because we often have to cancel plans, but it’s not us. It’s our health that is unreliable. How to support a friend who has a chronic illness. If you have a friend who lives with chronic ill-health you may want to support your friend, but are unsure of how to do this. Please know that your phone call, text or visit could be the only one that person receives that week, so your friendship is more valuable than you will ever know. Try not to over-analyze things too much. We are the same people we were before our diagnoses; we just have a few more challenges in life now. Supporting your chronically ill friend is pretty simple, really. Listen. Be flexible. Be informed. Be mindful. And most importantly, believe them. Listen. We spend a lot of time on our own, and when we do see people we often need to talk about challenges in our life, or sometimes we just need a bit of reassurance. Be patient and take time to listen to us. Also listen when your chronic illness friend expresses how you can help them. Be flexible. Expect that they may cancel plans – have a back-up plan so your friend knows they didn’t ruin your day and you’re still having fun. Offer to go to them – chronic illness is lonely. I’ve never felt more alone than when I was supposed to be with friends and instead I’m all alone in my bed in pain. Be informed. Educate yourself about your friend’s illness. Nothing shows your respect for someone more than taking the time to understand their illness. Be mindful. Living with a chronic illness often brings with it some very unique challenges. For me, the hardest and most frustrating symptom is my hypersensitivity. I’m hypersensitive to everything! Light, noise, perfumes, touch, chemicals. Be mindful of the challenges your friend faces and adapt your actions accordingly. This could mean not wearing perfume, or keeping your visits short so you don’t tire your friend out. Believe them. Respect your friend’s need for rest. Believe them when they share with you their struggles and symptoms. “I believe you” are extremely powerful words, especially as many people with chronic illnesses are often told they are faking, or exaggerating their illness. If they do have to cancel plans, do not take this personally. It literally has nothing to do with you and everything to do with their illness. To conclude, I would like to say a big thank you to my online friends. Although I have lost many “real life” friends, I have gained many wonderful and supportive friends online. Having a strong support system is the most important thing for my physical and mental well-being. I’m so thankful for social media because I can join groups and connect with people all around the world who have my illness, or similar illnesses. There’s nothing that feels better than having someone to talk to who understands what I’m going through. Finding others who are going through similar symptoms is nourishing, and connecting with others who live with chronic illness can provide much comfort. And I am especially thankful for the friends I have made through my blog. Follow this journey on A Journey Through the Fog.

Jo Moss
Jo Moss @jo-moss
contributor

Chronic Illness and Friendships

There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on our lives. When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. Formerly dear friends disappeared as I became increasingly unable to make or keep plans. But supportive friendships are vital for us spoonies. I felt like a burden to my friends. When I first became ill, I felt like a burden to my friends. I went from a happy-go-lucky healthy person, the life and soul of the party, to someone unable to socialize or even communicate at times. It’s extremely hard to adapt to living with a chronic illness. I often feel like a stranger in my own body, and at times I feel like I don’t even know myself. So it’s not surprising that my friends found it hard to adapt, too. The truth is, I’m not an easy person to be friends with; I cancel plans at the last minute, I can no longer do a lot of fun stuff I used to do, I may talk about my illness a lot and I may need more reassurance than most. And because of this, my confidence and self-worth took a big knock, and I found myself trying to justify their friendship. What could I offer to them now? Who would want to be friends with someone like me? But for those of you blessed with “good” health, I have a little secret to tell you: spoonies make excellent friends. We are caring and compassionate, understanding, loyal, appreciative, empathetic and often have a wicked sense of humor – how else do you think we survive living with chronic ill-health? It took me a long time to realize this, but I’m starting to know my worth rather than feeling like a burden. I am a good friend despite the challenges my chronic illness may bring. I deserve happiness, respect, love and friendship. Friendships for people with severe forms of chronic illness are not always easy. Our friends may find it hard to understand that we are too ill for them to visit or talk to. The severity of our symptoms may scare them. Sometimes our friends just don’t know how to act around us when we are ill. So it’s partly our responsibility to educate our friends and family, too. Anyone living with a chronic illness knows the ongoing uncertainty about how we will feel each day makes planning almost impossible – it has a huge impact on our lives. Not only is it hard to plan ahead, but we may also often have to cancel plans at the last minute. Not everyone understands this. Some people don’t get the damage chronic pain and illness can do to not only our physical health, but our mental, too. Although it’s almost impossible to plan ahead when you have a chronic illness, this doesn’t stop me from trying. But it is important that I’m flexible with my goals and plans, and it’s even more important that my friends understand this, too. I am lucky enough to have two very good friends who completely understand. They will even text me the morning before a planned visit just to make sure I am still well enough. And they do not judge me if I have to cancel at the last minute. This means the world to me. But over time, other friendships have fallen to the wayside as a result of my chronic illness. Please remember: we may seem unreliable because we often have to cancel plans, but it’s not us. It’s our health that is unreliable. How to support a friend who has a chronic illness. If you have a friend who lives with chronic ill-health you may want to support your friend, but are unsure of how to do this. Please know that your phone call, text or visit could be the only one that person receives that week, so your friendship is more valuable than you will ever know. Try not to over-analyze things too much. We are the same people we were before our diagnoses; we just have a few more challenges in life now. Supporting your chronically ill friend is pretty simple, really. Listen. Be flexible. Be informed. Be mindful. And most importantly, believe them. Listen. We spend a lot of time on our own, and when we do see people we often need to talk about challenges in our life, or sometimes we just need a bit of reassurance. Be patient and take time to listen to us. Also listen when your chronic illness friend expresses how you can help them. Be flexible. Expect that they may cancel plans – have a back-up plan so your friend knows they didn’t ruin your day and you’re still having fun. Offer to go to them – chronic illness is lonely. I’ve never felt more alone than when I was supposed to be with friends and instead I’m all alone in my bed in pain. Be informed. Educate yourself about your friend’s illness. Nothing shows your respect for someone more than taking the time to understand their illness. Be mindful. Living with a chronic illness often brings with it some very unique challenges. For me, the hardest and most frustrating symptom is my hypersensitivity. I’m hypersensitive to everything! Light, noise, perfumes, touch, chemicals. Be mindful of the challenges your friend faces and adapt your actions accordingly. This could mean not wearing perfume, or keeping your visits short so you don’t tire your friend out. Believe them. Respect your friend’s need for rest. Believe them when they share with you their struggles and symptoms. “I believe you” are extremely powerful words, especially as many people with chronic illnesses are often told they are faking, or exaggerating their illness. If they do have to cancel plans, do not take this personally. It literally has nothing to do with you and everything to do with their illness. To conclude, I would like to say a big thank you to my online friends. Although I have lost many “real life” friends, I have gained many wonderful and supportive friends online. Having a strong support system is the most important thing for my physical and mental well-being. I’m so thankful for social media because I can join groups and connect with people all around the world who have my illness, or similar illnesses. There’s nothing that feels better than having someone to talk to who understands what I’m going through. Finding others who are going through similar symptoms is nourishing, and connecting with others who live with chronic illness can provide much comfort. And I am especially thankful for the friends I have made through my blog. Follow this journey on A Journey Through the Fog.

Jo Moss
Jo Moss @jo-moss
contributor

Chronic Illness and Friendships

There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.” Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on our lives. When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. Formerly dear friends disappeared as I became increasingly unable to make or keep plans. But supportive friendships are vital for us spoonies. I felt like a burden to my friends. When I first became ill, I felt like a burden to my friends. I went from a happy-go-lucky healthy person, the life and soul of the party, to someone unable to socialize or even communicate at times. It’s extremely hard to adapt to living with a chronic illness. I often feel like a stranger in my own body, and at times I feel like I don’t even know myself. So it’s not surprising that my friends found it hard to adapt, too. The truth is, I’m not an easy person to be friends with; I cancel plans at the last minute, I can no longer do a lot of fun stuff I used to do, I may talk about my illness a lot and I may need more reassurance than most. And because of this, my confidence and self-worth took a big knock, and I found myself trying to justify their friendship. What could I offer to them now? Who would want to be friends with someone like me? But for those of you blessed with “good” health, I have a little secret to tell you: spoonies make excellent friends. We are caring and compassionate, understanding, loyal, appreciative, empathetic and often have a wicked sense of humor – how else do you think we survive living with chronic ill-health? It took me a long time to realize this, but I’m starting to know my worth rather than feeling like a burden. I am a good friend despite the challenges my chronic illness may bring. I deserve happiness, respect, love and friendship. Friendships for people with severe forms of chronic illness are not always easy. Our friends may find it hard to understand that we are too ill for them to visit or talk to. The severity of our symptoms may scare them. Sometimes our friends just don’t know how to act around us when we are ill. So it’s partly our responsibility to educate our friends and family, too. Anyone living with a chronic illness knows the ongoing uncertainty about how we will feel each day makes planning almost impossible – it has a huge impact on our lives. Not only is it hard to plan ahead, but we may also often have to cancel plans at the last minute. Not everyone understands this. Some people don’t get the damage chronic pain and illness can do to not only our physical health, but our mental, too. Although it’s almost impossible to plan ahead when you have a chronic illness, this doesn’t stop me from trying. But it is important that I’m flexible with my goals and plans, and it’s even more important that my friends understand this, too. I am lucky enough to have two very good friends who completely understand. They will even text me the morning before a planned visit just to make sure I am still well enough. And they do not judge me if I have to cancel at the last minute. This means the world to me. But over time, other friendships have fallen to the wayside as a result of my chronic illness. Please remember: we may seem unreliable because we often have to cancel plans, but it’s not us. It’s our health that is unreliable. How to support a friend who has a chronic illness. If you have a friend who lives with chronic ill-health you may want to support your friend, but are unsure of how to do this. Please know that your phone call, text or visit could be the only one that person receives that week, so your friendship is more valuable than you will ever know. Try not to over-analyze things too much. We are the same people we were before our diagnoses; we just have a few more challenges in life now. Supporting your chronically ill friend is pretty simple, really. Listen. Be flexible. Be informed. Be mindful. And most importantly, believe them. Listen. We spend a lot of time on our own, and when we do see people we often need to talk about challenges in our life, or sometimes we just need a bit of reassurance. Be patient and take time to listen to us. Also listen when your chronic illness friend expresses how you can help them. Be flexible. Expect that they may cancel plans – have a back-up plan so your friend knows they didn’t ruin your day and you’re still having fun. Offer to go to them – chronic illness is lonely. I’ve never felt more alone than when I was supposed to be with friends and instead I’m all alone in my bed in pain. Be informed. Educate yourself about your friend’s illness. Nothing shows your respect for someone more than taking the time to understand their illness. Be mindful. Living with a chronic illness often brings with it some very unique challenges. For me, the hardest and most frustrating symptom is my hypersensitivity. I’m hypersensitive to everything! Light, noise, perfumes, touch, chemicals. Be mindful of the challenges your friend faces and adapt your actions accordingly. This could mean not wearing perfume, or keeping your visits short so you don’t tire your friend out. Believe them. Respect your friend’s need for rest. Believe them when they share with you their struggles and symptoms. “I believe you” are extremely powerful words, especially as many people with chronic illnesses are often told they are faking, or exaggerating their illness. If they do have to cancel plans, do not take this personally. It literally has nothing to do with you and everything to do with their illness. To conclude, I would like to say a big thank you to my online friends. Although I have lost many “real life” friends, I have gained many wonderful and supportive friends online. Having a strong support system is the most important thing for my physical and mental well-being. I’m so thankful for social media because I can join groups and connect with people all around the world who have my illness, or similar illnesses. There’s nothing that feels better than having someone to talk to who understands what I’m going through. Finding others who are going through similar symptoms is nourishing, and connecting with others who live with chronic illness can provide much comfort. And I am especially thankful for the friends I have made through my blog. Follow this journey on A Journey Through the Fog.

Jo Moss
Jo Moss @jo-moss
contributor

When Asking For Help Is Brave

If you’ve ever shied away from asking for help because you fear you may seem weak, you are not alone. I often battle with this misconception myself, and no matter how many times I reinforce the message that asking for help is actually a sign of bravery rather than weakness, I still find myself hesitant to reach out to others at times of crisis. The past week has been a tough one for me. The recent hot weather, lack of sleep and the unwanted arrival of my period meant I was exhausted and struggling to cope. This exhaustion triggered my anxiety and panic attacks, as it often does. My anxiety levels soared, and I felt hopeless and weak. It doesn’t matter how many times my anxiety peaks like this, or how many years I live with anxiety as a close companion, it still knocks me off-balance every time. But often I’m my own worst enemy. I don’t always recognize the signs right away, and when I do I’m always hesitant to admit I’m not coping or accept that I need help. Lessons Relearned I talk quite a lot on my blog and social media about how asking for help takes strength, and showing your vulnerability and reaching out to others takes courage — it is certainly not a weakness, and it is something that should be embraced. But I’m not always good at applying this to my own life and struggles. But I relearned a few important lessons this week: 1. It takes strength to ask for help.2. Other people want to help if they can.3. Just sharing your thoughts and struggles not only reduces the negative impact on your mental health, but also brings you closer to others.4. The comfort of knowing you are not alone in the way you feel or act, in these moments of crisis, is empowering. Let me rewind and explain what happened. My anxiety levels were so high last week, I found it impossible to rest. My mind was racing, which left no room for the calm I needed to sleep. The more I tried and failed to rest, the more frustrated, anxious and irritable I became. These feelings are all too familiar to me; I know the signs well, and I have written about them many times. When my anxiety levels are high, I doubt myself. I doubt everything I do and say. Anxiety steals my confidence, even my ability to carry out familiar tasks which are like second nature. I often find myself irritable, short tempered, angry and confused. I become really needy and need constant reassurance. My mind becomes so overactive, racing from one negative thought to another, it doesn’t stop. One question triggers 10 more; it’s like having a 2-year-old child in my head constantly asking, “But why?” I knew deep down the cause of my increased anxiety was exhaustion and my hormones, but sadly this didn’t help. I unsuccessfully fought my overactive mind for days before I was forced to admit I needed help. I Reached Out and Asked For Help (Sort Of) So I turned to my Twitter friends. I posted a succession of tweets about anxiety, humorous at first because I didn’t want to come across as a complainer or attention-seeker (another misconception my anxiety drives me to believe). These tweets were honest and left me feeling vulnerable. I fought the urge to delete them straight away, but almost immediately I started receiving messages of support, along with comments from others living with anxiety who could relate to everything I had posted. My Twitter friends rallied around me, not only offering support and making me feel less alone, but also adding humor to the mix, which put a big smile on my face. Humor is a coping mechanism we often use (not always successfully), and this time it worked well. I was actually surprised at the response I received (I have no idea why). To be honest it was only a half-assed attempt at asking for help, but my fellow anxiety warriors could see the signs I was struggling. They read between the lines of my humorous tweets and saw I needed encouragement. Humans are amazing! I often say that Twitter brings out the best and worst in people. I have to deal with my fair share of trolls, but this week the Twitter community proved that social media can be a lifeline to those of us living with chronic illness or mental health issues. Concentrating my attention on the tweets, rather than fighting against my anxious and out of control mind, was such a welcomed relief. Distraction is sometimes the best medicine. I was still exhausted, and I desperately needed to rest, but sometimes you have to put your mental health ahead of your physical health. To Allow Yourself to Be Vulnerable Is One of the Bravest Things You Can Do Deciding how much I should share on my blog or social media is a constant balancing act for me. I want to be honest about all aspects of my health, but as most of you have your own personal battles, I don’t want to add to your emotional load. But I guess the biggest reason I don’t want to talk about my struggles while I’m in the middle of the battle is because it makes me feel so vulnerable. I don’t want to admit I’m not coping. I don’t want to admit I need emotional support. I don’t want to admit I haven’t got a clue what I’m doing. I don’t want to admit I don’t have the “control” I so desperately crave. I don’t want to admit I haven’t got my shit together — not even close. I don’t want to admit my failings and ask for help. So this post is a reminder to myself and anyone else that needs to hear it: 1. Asking for help is an expression of strength and wisdom, rather than weakness.2. To admit you are not coping takes immense courage.3. To be open about your struggles and to allow yourself to be vulnerable is one of the bravest things you can do. Breaking the Stigma The only way we can break the stigma surrounding mental illness is to talk about it — shout it from the rooftops. Being open about how I have felt this week and being brutally honest about how much I was struggling has brought me closer to my Twitter friends. It’s allowed me to make more emotional connections, and most importantly it helped me survive the anxiety hell consuming me. Many of us are all too familiar with the emotion of depression and the fear of anxiety. Unfortunately, too often people are unwilling to discuss this for fear of further rejection or judgment. As far as we have come with the advancements in mental health, stigma still exists when it comes to issues like depression and anxiety. When you feel like you are not coping, and find yourself overwhelmed by everything, it’s important to ask for help — it could be vital for your well-being and safety. Please don’t be afraid to reach out. I promise it’s not as scary as it first seems. Take care. Do you find it hard to ask for help?

Jo Moss
Jo Moss @jo-moss
contributor

Helpful Products, Tips to Make Life With Chronic Illness Easier

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. 1. 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 seconds) 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, 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. 2. 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 way I can control the brightness of the light in my room from my bed. Different colored bulbs/lighting. 3. 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. 4. 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. 5. Brain fog. Even remembering the simplest tasks can seem impossible when you struggle with 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 organized. 5. Showering/bathing is exhausting. People who have 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 spoonie’s 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. Keep wet wipes by your bed so you can freshen up when you need to. 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 takes just a minute to wash and I can leave it to air dry. 6. 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 who 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. 7. 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 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. Make life easier by utilizing online shopping. 8. I’m always too hot or too cold. I find it impossible to regulate my body temperature. Depending on how I feel I alternate between the following products: Heated throw Rechargeable hand warmer Ice packs Electric fan Cold wet flannels Hot water bottles 9. 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. Arrange parcels to be delivered to friends, family or neighbors or have a safe place where parcels can be left. Arrange deliveries for when your partner, friends or family will be at home. Keep your mobile phone at easy reach so you can call someone in an emergency. 10. I’m bored. I have too much time to think. When you are too exhausted to socialize or even watch TV, boredom can set in. Boredom can lead to an overactive or anxious mind. Why not try: Reading. Audiobooks. For the times when even physically reading is too exhausting, audiobooks are a great alternative. 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. Coloring books. A good distraction and a way to practice your creativity. Do you have any tips you would like to add?

Jo Moss
Jo Moss @jo-moss
contributor

Why I Cut My Hair to Help With My Chronic Fatigue Syndrome

I’ve always been blessed with strong, thick and healthy hair, which I’ve kept long for most of my life. My hair has always been the most striking and beautiful part about me. I used to get compliments daily and I used my hair as a form of safety blanket, which I could hide behind when my anxiety reared its ugly head. I used to be overweight and very self conscious about my physical appearance. But no matter how I felt, I always loved my hair. After losing weight I kept my hair long and became even more protective of it. I actually feared going to the hairdresser in case they took off more than an inch, when I asked for just a trim. I also had frequent nightmares about my hair falling out. Fast forward a few years and my physical health deteriorated to the point where I was unable to care for myself. I developed severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. The exhaustion and weakness caused by the ME/CFS meant I couldn’t wash and dry my own hair. The fibromyalgia meant anything touching my skin, including my hair, was extremely painful. And I had developed constant tension headaches from the weight of my hair when it was tied up. I wasn’t well enough to sit in a hairdresser’s chair, so my hair got dry, damaged and very, very long. Some of you reading this are probably thinking, “What’s the big deal? It’s only hair and it will grow back.” With all the challenges I face on a daily basis living with severe ME/CFS and fibromyalgia, cutting my hair would seem insignificant. But girls, from an early age, are fed the notion that you need long hair to be beautiful and feminine. I was terrified my husband wouldn’t find me attractive anymore, but it actually went a lot deeper than that. My long hair was such an ingrained part of my persona, I was afraid I would lose part of me if I cut my hair short. So, four years ago, I had to make a very tough decision: To cut my hair off or risk my health deteriorating even further. I chose my health and it’s a decision I’ve never regretted. The one thing I feared the most, losing my hair, had happened, yet the world didn’t end. It was actually quite liberating. I felt physically and mentally lighter. I could hold my head up without the weight of my hair dragging it down. My tension headaches stopped and the pain in my neck and shoulders reduced. I was able to wash my hair in one minute and let it air dry — no more spending 30 minutes under the hairdryer. I only had to wash it once a week which meant I could use my limited energy on other, more important tasks like eating. Because I’m unable to sit up long enough to have my hair styled, I have a buzz cut once a month. Yes, it’s quite a drastic solution, especially when you are used to having long hair, but it will grow back. I don’t know what the future holds. For now I am housebound, virtually bedbound. In the future, when I am able to leave the house, I may be more self-conscious of my lack of hair, but there are other solutions. When that time comes, I look forward to shopping for hats, beautifully colored scarfs and possibly wigs. Have you had to make any tough decisions for the sake of your health? We want to hear your story. Become a Mighty contributor here .

Jo Moss
Jo Moss @jo-moss
contributor

Why I Cut My Hair to Help With My Chronic Fatigue Syndrome

I’ve always been blessed with strong, thick and healthy hair, which I’ve kept long for most of my life. My hair has always been the most striking and beautiful part about me. I used to get compliments daily and I used my hair as a form of safety blanket, which I could hide behind when my anxiety reared its ugly head. I used to be overweight and very self conscious about my physical appearance. But no matter how I felt, I always loved my hair. After losing weight I kept my hair long and became even more protective of it. I actually feared going to the hairdresser in case they took off more than an inch, when I asked for just a trim. I also had frequent nightmares about my hair falling out. Fast forward a few years and my physical health deteriorated to the point where I was unable to care for myself. I developed severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. The exhaustion and weakness caused by the ME/CFS meant I couldn’t wash and dry my own hair. The fibromyalgia meant anything touching my skin, including my hair, was extremely painful. And I had developed constant tension headaches from the weight of my hair when it was tied up. I wasn’t well enough to sit in a hairdresser’s chair, so my hair got dry, damaged and very, very long. Some of you reading this are probably thinking, “What’s the big deal? It’s only hair and it will grow back.” With all the challenges I face on a daily basis living with severe ME/CFS and fibromyalgia, cutting my hair would seem insignificant. But girls, from an early age, are fed the notion that you need long hair to be beautiful and feminine. I was terrified my husband wouldn’t find me attractive anymore, but it actually went a lot deeper than that. My long hair was such an ingrained part of my persona, I was afraid I would lose part of me if I cut my hair short. So, four years ago, I had to make a very tough decision: To cut my hair off or risk my health deteriorating even further. I chose my health and it’s a decision I’ve never regretted. The one thing I feared the most, losing my hair, had happened, yet the world didn’t end. It was actually quite liberating. I felt physically and mentally lighter. I could hold my head up without the weight of my hair dragging it down. My tension headaches stopped and the pain in my neck and shoulders reduced. I was able to wash my hair in one minute and let it air dry — no more spending 30 minutes under the hairdryer. I only had to wash it once a week which meant I could use my limited energy on other, more important tasks like eating. Because I’m unable to sit up long enough to have my hair styled, I have a buzz cut once a month. Yes, it’s quite a drastic solution, especially when you are used to having long hair, but it will grow back. I don’t know what the future holds. For now I am housebound, virtually bedbound. In the future, when I am able to leave the house, I may be more self-conscious of my lack of hair, but there are other solutions. When that time comes, I look forward to shopping for hats, beautifully colored scarfs and possibly wigs. Have you had to make any tough decisions for the sake of your health? We want to hear your story. Become a Mighty contributor here .