Saturday, 1 March 2014

Diagnosis anniversary and update

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

Update

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!


12 comments:

  1. What a wonderful letter it is exactly what I would have loved to have found 4 years ago when I became ill and it's a fantastic way to acknowledge your anniversary in a positive way. Passing on your experience and lessons learned is just brilliant, well done. Siobhán

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    1. Aww thank you- so kind of you to say :) X

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  2. What a great blog Jess! I'll be linking to it straight away on my fb page (getupandgoguru) & twitter. I'm planning a list on my blog of great CFS/ME blog posts to read. I'll be including this one. You write so well & capture the experience of CFS/ME (& being newly diagnosed) so well! Keep up the great writing & I hope the break from Uni helps your health.
    Cheers Louise (GetUpAndGoGuru.com)

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    1. Thank you so much!! :) Take care x

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  3. Very good Blog Jessie. I am just finished my 4 years sick anniversary. I was diagnosed only after about 18 months after getting sick, mainly because my provincial CDC took special notice in me after being bit by a monkey in Indonesia. Their infectious disease expert referred me to one of the few people in this country who could be considered an ME expert. I have been seeing him every 2-4 weeks since diagnosis. I truly believe his early and constant care and his willingness to treat the symptoms has enabled me to get well enough to stay working ...well that and the incredible flexibility and accommodation made by my employer to keep me employed. I really do believe that many of us can get much better if we get early good treatment and help. But I am realistic in that I have yet to meet anyone who has been cured. I think it is always important to distinguish between a reduction in symptoms and their intensity (getting better) with the total elimination of symptoms (cure). Lots of articles and posts say people get better and sometimes friends and family read them and then think that my friend or husband just needs to try harder or try this and they will be cured. Believe me, I am praying for the day their will be a cure for us all; but for now, I would be happy with having 90% of my life back.

    All the best, John

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    1. So sorry you have been sick for so long too, but it's great to hear that you've had such good care and close medical supervision :) I'm also pleased to hear that you've remained well enough to stay working with accommodations, and that your employer has been so supportive. I totally agree that there's a huge difference between improvement, or even remission, and a cure.. I'd be very happy with 90% of my life back too! Hope your health improves and better years lie ahead, Jess x

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  4. Hi Jess, thanks for sharing, all good advice. I just had my 4 year anniversary too and I wish someone would have told me these things. Even today, 4 + years in, I still need to be reminded that it is ok and necessary to rest and that it is ok to be sad sometimes. And I had to laugh at your comment about washing your hair because I joke about only washing my hair on Tuesdays and sometimes on Sunday because it is just too much effort most days!

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    1. Thanks :) Sorry you've been ill so long too, but glad you agree with what I said :) Haha, my hair is so often horrid these days- washing it now feels like such a mammoth task so I totally empathise ;) Take care x

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  5. Ramsay and Acheson were vehement that complete rest from the outset gives the best prognosis for recovery. If your doctor prescribed rest, because it is known to help towards recovery, maybe we would feel a lot more positive about it. Conserving muscular exertion is a positive contribution towards getting better, recent research by Jason et al found that if we keep our activity below our perceived energy levels on a daily basis, patients found that the level of activity they could manage increased. I swear by keeping your head supported - it weighs nearly ten pounds, and you can save that exertion. Also our carers need to know that every bit of muscular exertion they save is is a positive contribution towards getting better. Recliners- so we can go flat as and when we need to, without 'going to bed'. Hair washing - I don't know, can you run a deep bath and do it lying down, just doing a final rinse with fresh water (shower on a long flexible thing?) Become an exertion-conservation expert! Creative resting. Determined resting. Aggresive resting.....look at my little article at www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs

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    1. Such great advice, and I totally agree- rest is vitally important! I already wash my hair lying down but it's just really difficult, for both my core/trunk muscles and my arms, but hey, I cope.. ish! I love the term 'exertion-conservation expert'- might start using that as my job title ;) Will definitely take a look at the article (I did when you first posted the comment in fact, but I can't remember now due to memory issues so will look again!), thanks :)

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    2. Remembered it as soon as I opened it- great article! Thanks for writing it and for sharing it with me :)

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  6. Thank you so much for this. I was diagnosed last year and it was such a shock. You are able to communicate in such a compassionate way and so clearly how important it is to find a way through this for yourself

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