I have chronic fatigue as well. Do you have any tips on trying to manage it? I've done all the bs lifestyle changes, blah blah blah. But I would love to hear from someone who ACTUALLY has chronic fatigue. Any advice?
Advice for CFS sufferers from a CFS sufferer.
First things first I want to make it perfectly clear that everyone with CFS/ME is different and because of this things that work for me might not work for you or others. However, I’m going to give some advice based on things I do or things I wish I did.
Food and Drink
It is important to make sure you continue to eat and drink even when you are on your worst days. You may not feel a lot better when you’ve eaten but believe me you will feel worse if you do not eat. Food is important and so is hydration.
Microwave meals are a lifesaver. They may not be the most nutritious thing and they may not always be the nicest but it is always better to eat something than nothing. Microwave meals take next to no effort. Pull it out the freezer, pierce some plastic and away you go. And you can get such a variety of things. Please do not neglect your body.
If you do want to cook, be productive on your better days. Cook up things that you can freeze and come to easily. Things like tortilla based foods, pasta based meals, even rice can be cooked and frozen and recooked. This was pretty much what I lived on when I was at uni the first time because it saved so much energy which I rarely had at dinner time.
If you are in bed and struggling to get out keep a large drink by your bed. I have a cinema special edition cup that I got at a midnight screening once. It holds a litre and has a really long straw so I don’t have to worry about holding the heavy cup or even sitting up properly if you don’t want to or can’t. If you’re out and about carry a drink with you.
Coffee is useful but don’t rely on it too much. Coffee may give you an energy boost but most people even without a chronic illness feel a come down from coffee, imagine that come down with the addition of always being fatigued. I am guilty so much of over using coffee and it’s not good when the come down happens.
It can be hard if you’re used to wearing clothes with a lot of buttons and zips and heals or what have you because dressing can be difficult and can take a lot of energy that you might not be able to spare. For me, hoodies, t-shirts and jogging bottoms are a must. They are easy to get in and out of and comfortable whether you are out and about or lounging inside.
The other thing is pyjamas. With CFS you’ll probably spend more time in your pyjamas that you did before you had CFS. Invest in cute pyjamas. Ones with your fandoms on or cute animals or whatever it is you’re into. If you’re in Britain Primark is great for cute pjs, I love them because they’re so cheap. Continuing the pj theme, you need to have pjs for warm and cold weather or warm and cold you. Sometimes it’s like 25oc outside and you will be freezing, sometimes it’s -5 and you’ll be boiling, so bear in mind that the temperature outside doesn’t necessarily correlate to the temperature of you. Fluffy socks are great too.
If you have a bath and a shower at home, find out which you find easiest and do that. I personally find showering easier because while standing for long periods is difficult, I find that baths cause me to go lightheaded and feel really off. It is okay to go a few extra days without bathing/showering than you normally would. You may feel kinda off because of it but it’s not the end of the world and resting up is definitely more important than washing your hair.
On the subject of washing your hair, invest in dry shampoo. I’ve not used it but I’ve heard a lot of other spoonies talking about it and how useful it can be. If you’re struggling to bathe or shower but you want to do something, things like strip washing while sat on the toilet seat can be really helpful as well.
Mobility and Life Aids.
This is a really big one: Do not be afraid to use aids. Do not be afraid or ashamed to use anything that might help you. Whether this is a walking stick, a wheelchair or anything else, you are allowed to use it. You are disabled enough, you are ill enough. I’ve known people with chronic illnesses who have been afraid to get mobility aids because they are young, because people are more ill than you or whatever reason. It’s bullshit, okay. I don’t care if people think you don’t need it. If you feel like you need it and it will help you then you have every right to get it.
I don’t use a great amount of mobility aids but I have recently brought a walking stick and it has honestly made the world of difference for me. It’s lengthened how long I can walk for, how long I can be upright, how I can be out. I put off getting it for a long time for the reason above and it’s stupid because it helps. If you can be helped by getting one, do so.
This goes for everything. This does for anything that can help you. Things that are generally advertised towards older people are not solely for them. You are never too young for an illness, you are never too young to need something.
This is a bit of a lighter note but when you’re in a place where you can’t go out or you can’t go out for very long, life can get really really boring. If you don’t have the energy to do a lot you need to find things that you can do will you are stuck at home. I have a few things to recommend but there really whatever you can manage is great
1. Netflix. TV and DVDs are great but Netflix is a life saver for me. There is a lot more on there, it’s very easy to find something new to watch whatever mood you are in.
2. Audiobooks. Getting a subscription to Audible was a wonderful decision for me. I love reading so much but I don’t always have the energy to follow the words or even hold a book, so having an audiobook means I can still get the entertainment of books without having to put so much of the effort into it.
3. Crafts. If you’re able to do things with your arms without getting achy, I definitely recommend some sort of craft. I make things out of felt, but drawing, sewing, decoupage, writing, colouring books, anything really to keep your brain stimulated.
4. Phone Games. You have next to no energy but you’re too awake to actually sleep, phone games are wonderful. They take little energy and little concentration.
5. The Internet. I wish I had known how great the internet is for spoonies when I was first diagnosed. God, it is wonderful.
Like I said, there are more, there are so many more. These are just a few I use.
Medication and the Medical Profession
Every spoonie to ever spoon knows that the medical profession is an endless cause of frustration. You’ll regularly go to your doctors and be told that you just need to pace yourself or that it’s mental health related or this or that and what they are really saying underneath all of this is ‘we know jack shit about this illness’. It is important to find a doctor who believes you, unfortunately there are still a large number of medical professionals who don’t believe in CFS and it fucking sucks. Find a doctor who believes you, who listens to you and who at least tries to help even when there isn’t anything they can do. You have every right to change doctors if the one you had is more harming than helping. Remember that.
Get doctors to check for other things. Don’t allow them to put everything down to the CFS. A lot of the time it will be. A lot of the time you will find that there is not logical explanation and you’re going to have to get used to that. But sometimes there will be other things as well. I was anaemic while also having CFS and iron tablets made the world of difference to me. I was on iron tablets for two years and my iron has finally normalised.
If you suffer from brain fog, before going to the doctors make a note of what you wanted to talk about. It can be in depth or it can literally just be bullet points to trigger your memory when you get there. If you are worried you’re going to forget what the doctor has said to you, ask them to write some things down for you. They should be willing to do so.
If you have medication, do whatever it takes to remember to actually take it when you’re supposed to. I use a pill organiser so I know whether or not I have taken them each night. I find I have to check twice that I have filled it properly, brain fog can honestly be a problem with this. But pill organisers are definitely useful. Alarms are another thing that is useful. If you have to take something the same time each day set an alarm that says ‘tablets’ or something like that so you remember it.
Painkillers are your friend. See if you can get them on a prescription because you will probably end up taking them regularly. You will often find that they don’t help or only scratch the survive of the pain, but believe me it is better than nothing at all.
I hugely recommend keeping certain things in your house. I have a drawer of my bedside cabinet that has my prescriptions and other related things in it. Keep in painkillers, heat pads, cool pads, a first aid kit, lip balm, and probably some other things that I can’t think of right now.
Having an illness like CFS messes with your mentally as well as physically. This is partly because of the effects of the actual symptoms and partly because of other people’s reaction to you. People suck when it comes to illnesses and disabilities. Being diagnosed with CFS is a life sentence that often comes along with losing friends and family members, it often means having to stop studying or stop working. It is a complete shape up of your life. It’s the knowledge that this may or may not get better and if it gets better again it may just as tell get worse again.
Whatever you are feeling is okay. You are allowed to be angry, you are allowed to sad, you’re allowed to be frustrated. There is no correct way to feel about your illness or the way you are being treated because of it. You are not doing anything wrong if you’re so angry you just want to scream at everyone. You are not doing anything wrong if you just want to cry and cry. People will spout a load of shit about positive thinking but it is unhealthy to be positive all the time and if you are upset or angry or whatever you are allowed to be. Don’t let anyone tell you that you shouldn’t be feeling that way.
Out and About
You are likely to miscalculate the number of spoons you have. This can go either way but you are very much more likely to overestimate. Don’t let your illness stop you from doing things if you feel like you can do them. But on the flip side don’t do things when you are too ill because you feel like you should be. Sometimes you will go out thinking you can deal with a day of action and you after a couple of hours you will find that you actually you really don’t. It is hard, almost impossible to properly calculate spoons.
1. Take your Mobility Aids. There is a change you won’t need it but it is 100% better to carry it with you and not need it than to need it and not have it with you.
2. Rest along the way if you need to. Whether this is leaning against a shop window because holy hell suddenly the world is spinning to fast, whether it’s stopping by a café because getting a drink and/or a snack will give you an excuse to sit down for, well, as long as you need really, or whatever it is but listen to your body and give it the rests it needs.
3. If you need to leave something early do so. Is it frustrating? Does it make you feel anti-social and boring? Yes and yes. But if you cannot manage what you have organised even if you are part way through it and you need to leave do so.
4. Have a back-up plan for getting home. Now this is something I don’t do and really wish I did. Say one of your friends is the designated driver and you are on a day out and suddenly you don’t have the energy to go on but you also don’t want to ruin the rest of your friends’ day. Have another way to get home: someone who can pick you up, public transport, whatever but have a way.
People can suck. We all know this anyone but having an illness like CFS you learn a whole new way in which people suck. And you learn, sometimes, that it’s not stranger that suck all the time, sometimes it’s your closest friends. I’m very lucky now because I have friends who do their utmost to understand and help in any way that they can but I haven’t always been so lucky. I was thirteen when I was diagnosed and I was off school was seven weeks before any of my friends got in contact with me. People don’t always bother with people who aren’t around anymore and it’s really sucky but it happens. It hurts, it hurts a lot, but I promise you there are better people out there. You will find people who care about you whether you are healthy or ill or whatever else.
Family and friends won’t always believe you. People will make comments about how you are exaggerating, how you are lazy, how you need to just push through. They will tell you’re making their life difficult because of your illness, etc, etc. There is no end to abled-peoples insensitive comments. I’m sorry but the only thing you can really do here is learn to let it go over your head. It will take time but eventually you’ll learn that you are the one in your body, you are the one who know what its really like and that you are not a burden, you are not a problem, you’re just a person who is ill.
Everyone and their aunt has a ‘cure’ for you. Everyone knows someone who suffered from it and if you just ‘try yoga’, ‘cut out gluten’, ‘change your diet’ you will be better again. It’s bullshit. It is a chronic illness and chronic illnesses mean there is not a cure. People are insensitive as I have said. Ignore them the best you can and focus on the things that you know to help or hinder. Once again, you are the one in your body after all.
This is probably the most important part of all of this and it encompasses pretty much all of the headings. Looking after yourself is the most important thing. You need to put yourself first, you need to make sure you are doing everything you can for your health, for your well-being. If this means sometimes you just put on clean pjs and go back to bed, then you do that. If this means laying in a bath until the water is almost cold, do it. If it means lying on the sofa with a blanket and a teddy and a cup of tea do it. If it means pushing yourself a bit too much one day and dealing with the consequences for a week then do it. You deserve to put yourself first!
There is probably a lot more I could say but I think this is long enough already. I really hope this helps lovely and that it wasn’t too intense to read. If you want me to talk about any specific subject either in more detail or something that I haven’t touched on at all please feel free to message me again. Hope you’re having a less than terrible day. Love and spoons. xxx