As it's the 4 year anniversary of my diagnosis, I thought I'd do a quick blog as a letter to anyone who is newly diagnosed. It is what, 4 years on from my own diagnosis, I feel the newly-diagnosed should be told: (note- there is an update at the bottom if anyone is just interested in that)
Dear ME/CFS newbie,
I'm really sorry you're ill. It's rubbish. And you might not get well soon. That's seriously rubbish. But it's good to have a diagnosis. You may be relieved after a long struggle to be diagnosed or it may have come as a bit of a shock.. Either way- getting used to having a diagnosis will probably be strange, but having a diagnosis will make things easier moving forward. You already had the illness, that's not changed, you just now know what it is. The diagnosis is a positive thing, although I appreciate that it may not feel that way right now.
It's ok to feel however you feel, you're coming to terms with a serious diagnosis. Let yourself feel however you feel and don't beat yourself up for it. Be kind to yourself.
You *need* to pace, which means rest is going to have to become part of your life. Slow down. Look after yourself. But if you do too much and suffer for it sometimes, that's ok too, it's your body, your choice, you do still have control over what you do, but in time you will have to accept that if you do too much it will hurt. Take as long to accept that as you need though. Acceptance is not easy, you will likely experience a lot of emotions and grief over the coming months, that's normal and it's ok.
You may well be sleeping a lot at the moment if you are early on in the illness- you need the rest, that's fine- but there will probably come a time when you struggle to sleep at night, at which point look up sleep hygiene- there's plenty of advice online. Trying to achieve a normal sleep cycle and improving the quality of your sleep will help.
Don't rush to blurt everything out to everyone possible, but at the same time I would advise that you do reach out for support. Remember that you can't un-tell people, but at the same time remember that you need a support network. It's up to you who you tell, how much and when. Take your time. Whatever you decide is fine. You have control over who knows what, and remember the information you give and the attitude you display about your illness will influence the way others view it.
There is also a massive, supportive community online if at any point you feel that you'd like to communicate with people who truly understand what you are going through first-hand. Try #spoonie (referring to spoon theory by Christine Miserando) and #MECFS on twitter. There are also forums- take a look and see whether there's one that might suit you. I don't have any personal recommendations, but I know there are ones specifically for ME/CFS, some for chronic illnesses (I think) and others for sufferers of specific symptoms e.g. Chronic pain.
Your body quite likely feels alien to you at the moment. Try to learn it's new limits. These will probably be constantly changing, which makes this a very difficult task, but try. Try to find a level at which you can function without majorly exacerbating symptoms.
Consider things that may help if/when the time comes/when you're ready. Would a wheelchair help, for example, if you're struggling with mobility, or if fatigue from walking is preventing you taking part in things? Think about what you want to be able to do and whether there's a suitable way of doing those things.
Find someone who can support you medically and keep in touch with them. I'm not meaning every day or every week, but having a follow-up every few months is probably a good thing so new symptoms can be monitored.
It's fine (and can be comforting) to read about other people's experiences on blogs like this online but please don't think this means the same will happen to you and discuss any suggestions with a medical professional. There's some weird advice given online and not all of it is safe or a good idea! Be careful and do your own research, however genuine and well-meaning the 'advice' seems. We are all only speaking from personal experience at the end of the day, and we may not even have exactly the same underlying pathology (thing wrong), because of the way CFS is diagnosed.
Please, if you have read parts of my blog, or go on to do so, do not think everyone goes downhill, that this condition always gets worse, that you will be ill for many years or it will always get this bad. CFS normally improves with time. You'll probably have relapses, but you will also probably improve! Early on, your chance of recovery is good. Even if you are ill for years and you do lose a lot of mobility etc there is still reason for hope that things will improve. Pace yourself and look after yourself and you'll be giving yourself the best chance of recovery.
If you're anything like me, some days will be horrible, and there will be times when it all feels just too much. Don't feel bad for feeling bad, you shouldn't be having to deal with all these symptoms. Hold on, hard days always come to an end and often things seem brighter the next day/week.
Take care and if you want to chat to me feel free to message me on my Facebook page Facebook.com/Jesscfs, contact me on twitter @Jess_ME_CFS (if you need me to follow you so that you can DM me that's fine- just tweet me saying you'd like to chat) or you can email me (jess.cfs.blog(at)Gmail.com). I'm always happy to chat to anyone, newly-diagnosed or not, although replies won't always be quick due to obvious ill-health!
Take care all
I am coping well mentally. I'm not doing a lot but that is helping physically. I've stopped my tramadol and paracetamol (pain medications)- I had been taking both regularly twice per day but have decided to try without, now that I'm not pushing things so hard with not being at Uni, and it is going ok. My pain is a bit worse, but at the moment it's bearable. I will still take them as needed when my pain is bad. I came off them without speaking to a doctor (don't do this, it's naughty- do as I say, not as I do), and my heart has been playing up a bit since (more palpitations and a surging feeling), but I'm sure it's fine and will settle down. It may just be a coincidence. I'm managing to leave the house, on average, a couple of times per week. Washing my hair is a challenge which I'm finding very frustrating, but dry shampoo is my new friend and I just have to take my time and stay calm. I saw a doctor recently to re-register as a temporary patient at home-home as opposed to Uni-home so that I can get prescriptions etc, without messing up my hospital care near Uni-home. He was friendly, supportive and accepting, which has made me feel happier about receiving any urgent medical care as needed while I'm here. I've had an appointment through about my fainting stuff but that's quite a long while away, but that will be interesting. I had a letter from the GI unit to say that all tests/investigations had not found anything. They're not planning on seeing me again which I, personally, don't feel is good practice when the cause of the symptoms has not yet been identified, but we'll see how things go, and I have other doctors who I trust more that see me regularly, and at least it has ruled the basics out. So yes, I'm not too bothered. My nausea is fairly well controlled, my appetite is now good, abdominal pain is bearable and I'm *finally* putting on weight. Slowly but steadily my weight is most definitely going in the right direction now which is a huge relief! I'm feeling a bit less stressed about everything now- settling down into my new, slower-paced, relaxed, *temporary* lifestyle! I'm glad I know there will hopefully be an end to the rest-orientated life in September, but it's nice to finally feel symptoms reducing for once. I feel really useless because my level of ability is so low, so I'm in bed until between 3pm and 5pm most days, am being brought lunch in bed etc. but it feels good to be functioning within my limits at last. I'm being kinder to my body. I do have to push things sometimes, because obviously I do have to bath and wash my hair every-so-often, but a majority of the time I'm now being much kinder to my body. Mentally I'm feeling ok. I feel indifferent about the diagnosis anniversary (unlike last year! http://jesscfs.blogspot.com/2013/02/upcoming-anniversary-emotional-roller.html) which is good! It would be nice if someone could guarantee that I will be well enough to return to Uni in September and this will be the year things start to improve at long last, but I know no-one can give me those guarantees, but I can rest and hope :)
I'm not ok physically, but mentally I'm ok with that, as long as it doesn't last forever!