Saturday, 22 March 2014

Breast Cancer: #nomakeupselfies & my breast clinic experience

When the #nomakeupselfie trend first started, I admit I was cynical and skeptical. How was taking a selfie without make-up on relevant? How was it meant to raise cancer awareness? Everybody has heard of cancer, so why was 'awareness' without sharing any symptom information helpful? Many people were sharing the images without saying why, or (seemingly) donating, and weren't giving details of how to donate. It all seemed a very odd and pointless idea.

But then things really took off, people were sharing their images along with information on how to donate to charity, were mentioning cancer awareness/breast cancer awareness and reports started coming in about a surge in donations to cancer charities. I was more than happy to be proven wrong! It's great that social media has helped to boost these charities' funds. I also really admire the few people I have seen who have bucked the trend and joined in but donated to charities more personal to them- there are other charities just as deserving and arguably much more in need of the awareness!

To be honest, I don't even know what the meaning of the timing of the selfies is.. It's not breast cancer awareness week/month, I checked. But as it seems to randomly be a time for awareness, I thought I would share my story (no, I haven't had breast cancer) to hopefully put other people's minds at rest if they ever have to go to a breast clinic because of symptoms of possible breast cancer. I'm just focusing on my experience of breast cancer investigations because that seems to be the awareness these barefaced selfies were intended to be for.. It wouldn't have been my choice- I've been investigated for many other cancers whilst chronically ill (lung cancer, stomach cancer, ovarian cancer, brain tumour etc.), and none of those investigations would have involved me writing about my breasts in public.. typical.. But here goes..

A couple of years back now, I found a lump. I thought it might just go away, but when it was still there weeks later, I tried to make an appointment with my GP to get it checked. I was frantically on the Internet looking at statistics and which lump characteristics made cancer more/less likely; because of my age cancer was thankfully very unlikely, and most lumps are benign, but it still needed to be investigated- all lumps do. I struggled to get an appointment, but eventually managed to be seen by someone who took a history, examined me and decided that I needed to be referred to the hospital clinic, because they couldn't be sure. I got a phone-call about a week later, I think, asking me to go in to a breast clinic at the hospital a few days later.

Everyone was really lovely. The clinic I was seen in was very quiet. A nurse took me into a room and asked me questions about my symptoms, how long they'd been going on, fluctuations in the lump, my other medical issues, family history of breast and ovarian cancer etc. I had another nurse also in with me, who said she was going to stay to give me moral support.

I was then examined, which obviously it's never pleasant, but the ladies were really lovely and very supportive and they do it all the time, so it's nothing to be embarrassed about really. They said they couldn't tell what it was just from examining me and that I would need an ultrasound scan and possibly a biopsy, depending on how things went.

I was then taken round to the breast screening service down the corridor, which was much busier, and full of older women, most of whom were there for routine mammograms. I got called through to get ready and changed into a gown and was sat waiting for what felt like a long time. Most of the women were having mammograms, and there were lots of rooms doing these, whereas I was waiting for an ultrasound (because of my age- younger women have denser breast tissue, so ultrasound is more appropriate), which were only taking place in one room I believe. Women came and went and I just sat there. Most came back and said they were all done and reassured the others it was nothing to worry about, got ready and went home. I seem to remember a few were kept for further testing because of unclear images or something. I think some of them were wondering why I was there, as it clearly wasn't routine screening for me. There was a supportive, mostly off-topic, chat in the waiting area. I stayed quite quiet- I did feel a bit like the odd one out... but it felt like we were all in this together.

I eventually got called through for my ultrasound and got supportive smiles from the other ladies as I walked away. I lay down and a lady checked my details and started scanning me. She soon tracked down the lump and started doing measurements on the screen. Unfortunately, she didn't really think about what would be the best small talk... She asked me whether I was on my own- I said that I was, but I had friends at home just around the corner that I could call on if needed. She asked me where my mum was, how far away that was and how long it would take her to get here; I replied and she commented that it was quite a long way away/a long time, and then went quiet, busily working away on the screen.. None of this was exactly putting my mind at rest. Everyone in this situation knows that they have been referred into breast cancer services, there's one thing in particular that is being feared at this stage. When you are aware that they know what they are looking at, and you too can see the lump on the screen but can't interpret what it is, the last thing you need is someone asking questions that seem to imply that you should have brought someone along with you. I had wanted to be on my own, but I started to doubt myself- maybe it wasn't a false alarm after-all..

Completely oblivious to the slight panic she had just caused, the lady scanning me eventually said that she had finished and thought it looked very much like a benign fibroadenoma, and my age made this the most likely explanation, but that she would send the images through to the clinic and they would discuss it with me further.

I went back to the waiting area, got changed in a cubicle and wished the other ladies luck, and then headed back to the clinic and sat alone in the waiting room waiting for my results to get back through. I felt a bit more at ease, but wanted the final 'it's nothing to worry about' from the clinic staff.

I wasn't in a wheelchair/on a scooter at this stage, and was starting to get exhausted, so the staff thoughtfully took me into the closest possible room to the waiting area. They had discussed with the consultant and come to the conclusion that they could be confident that it was a fibroadenoma and no further testing (i.e. a biopsy) was required. I seem to remember they said I could have one if I was very concerned, but they felt that it was unnecessary. I was perfectly reassured, so agreed that a biopsy was not needed. I was given information on the diagnosis, reassured that I was at no greater risk of breast cancer as a result of it, and told I should definitely get any further lumps checked out in the same way in the future as needed. I was also told that the lump might go away, stay the same, or get bigger, and that I could have it surgically removed if it became a problem or bothered me, but that this would obviously result in a scar. This has thankfully never been necessary- the lump has remained very small, and completely unnoticeable.

I went home and shared the good news with the very few people I had told about the situation. I didn't find it an easy thing to be open about, and still don't really, but it's important that people realise the importance of getting things checked out. Many people will only need to see a doctor and even if there are concerns and a referral is made to hospital, most people who are referred to breast clinics will still, like me, get good news. Don't let fear or embarrassment stop you from getting things checked and seeking a diagnosis. I felt self-conscious going through the process, so if you feel nervous- I do understand, but the peace of mind you get when they tell you it's fine (which most people will get!) is so worth it! And if it's not good news, then it's better to find it earlier than later.. Certainly from my experience, the staff were extra-lovely, because they know it's a bit unnerving for patients, so don't worry- you'll be well looked after!

Please, check, and if you find anything, get it checked out. And I don't just mean lumps- there are other signs and symptoms to watch out for too- redness, swelling, discharge, pain etc (see images). Try not to panic if you do find something, a vast majority of the time the cause of these symptoms isn't cancer, but if you notice anything different, do please go and see your doctor. Early recognition and prompt treatment can save lives!

Healthline have contacted me (see comments) since publishing this post, asking me to share this link to inspiring quotes about breast cancer from celebrities who battled the disease:

Hospital appointments update

I had a couple of really useful hospital appointments the other day. Good advice, and at a time when I was beginning to flounder and wanted to start moving forward somehow.

The first appointment was with the maxillofacial team who manage my facial pain. We have made the decision that I will try a different medication even though my facial pain is currently quite well controlled, because my current medication (gabapentin) could be causing (or contributing to) my abdominal pain. I'm going to taper down my gabapentin dose while taking a gradually increasing dose of pregabalin, in the hope that the facial pain will remain controlled during the transition, and to avoid effects of fast changes in either medication. I've been on gabapentin for a long time now, so it feels a bit scary to be trying something new, but it may actually lead to better control as I can only tolerate a relatively low dosage of gabapentin. Abdominal pain apparently isn't listed as a potential side effect of pregabalin (although obviously plenty of other things are- please no!) so at least it will determine whether gabapentin has had anything to do with the abdominal pains! And at least I know what dosage of gabapentin will get the pain back to bearable levels if the pain does get out of control again, which is reassuring.

Next I saw my dietician. My BMI is now just above 15, so getting back into safer territory- phew! She was pleased with how I'm doing, and asked me to congratulate my mum for managing to feed me up a bit! There's still a long way to go, but things are going in the right direction. The challenge now is to keep my weight increasing. If my nausea flares up massively and things start heading in the wrong direction again, we can resort to tube feeding- this would be post-pyloric, straight into my small bowel, bypassing my stomach, to try to minimise the nausea. Nobody wants us to have to go down this route, but at least it's there as a last resort. It would be pretty grim, and I would be disappointed, but what will be will be. Hopefully my nausea will remain controlled well enough and it won't ever become necessary.

Lastly, I saw my consultant. He'd had a chat to my dietician, and he was pleased with my weight gain too. He also reiterated the importance of keeping things moving in the right direction because there was still quite a way to go, and said that increasing my weight should hopefully really help with my overall condition. He said that he's happy for me to increase my dosage of prochlorperazine (Stemetil) slightly, to see if it can get my nausea back under better control because it's been difficult again for a few days. I'm only on a total dose of 3mg/day at the moment, and had vision problems after a while on 15mg/day, so there should be some scope to increase my dosage without it causing the vision problems that it caused at the higher dose. He was very clear that my weight is really important to continue to work on to aid my overall condition, and I hope it's something I can continue to make progress with (as long as this spike in nausea is just a slight blip), so that gives me hope.

We discussed the fact that there still seems to be a lingering degree of concern from some members of my team that I have an eating disorder of some kind. Reassuringly, my consultant said that neither he, nor my dietician, have ever felt this was the case, and he is very aware that it's when my symptoms get out of control that my weight drops as a result. So it's good to feel that they understand. A letter has been sent round to people recently by my psychologist in which concerns were raised once again about my weight and whether more should be being done, but the only thing left to try in addition to what's being done is tube feeding, and I don't feel that this is necessary at the moment, and neither does my dietician. My consultant seems happy as long as I can continue to maintain progress. It is being monitored, and everyone remains concerned, but also cautiously optimistic right now.

I said I was concerned because I've had problems with my left foot turning inwards and dragging a bit for a long while (which we had discussed previously), but I was starting to see signs of it beginning to affect my right foot too, and it causes pain in the arch of the foot and makes my balance even more challenging. He watched me walk a few steps and could see the problem. He advised me to wear proper, supportive footwear- I freaked out thinking it might mean the end to my ugg-boot-wearing, but then realised I don't walk outside, so they don't get walked in anyway- phew! I clarified with my consultant and he said that he wanted me to be wearing supportive footwear when walking around the house, as walking bare-footed allows my foot to flop and move in an uncontrolled, unrestricted way. It also needs to be addressed with physio under the CFS team (which I was referred for before as a result of this, and other problems, but was deemed too unwell/underweight at the time).

I then went on to say that I was getting sharp chest pains and tenderness around my ribs, and wanted to check that this would just be my CFS. He checked some of my recent blood results to see whether there was anything amiss, and my vitamin d was fine, which he was checking in particular because I don't get out much these days, but he found a low folate level that hadn't been picked up on, so I need to re-start on folic acid, but that's not a problem. He also advised that I take a multivitamin to ensure that I'm getting enough of everything. Interestingly while checking through various results it turned out I have also been tested for multiple food allergies to check they weren't causing my nausea and they came back negative, so that's good to know.

We then discussed whether any further investigations were warranted for my abdominal problems, given that my gastroscopy and ultrasounds came back clear, and the upper GI team don't seem to intend to see me again. My upper GI consultant had said that if the tests came back negative, I should probably be referred for a colonoscopy. He said that none of my tests had indicated that there would be any bowel disease, but when I said that I have been on Buscopan (hyoscine butylbromide) for years now and can't miss a few doses without severe pain, he said that a colonoscopy really should be done to rule out any other disease and confirm a diagnosis of IBS, to put everyone's minds at rest that things have been ruled out if nothing else, and because the medication could be masking things. So I'm going to get a referral put through by my 'temporary GP' at home-home, as it makes more sense to have it done there than near Uni-home. I said I'd had my gastroscopy without sedation and he advised me not to attempt the colonoscopy without sedation, he said he doubted the department would allow it anyway, but that it wasn't worth attempting. It might take me a while to recover from the sedation but it seems there isn't much option and at least it won't affect Uni or anything at the moment. I'm dreading the idea of this, but I do see why it should be done, so it's just one of those things.

Next on my agenda was prognosis. I asked whether I was likely to be well enough to start back in September. I knew it was a fairly unanswerable question, and, unsurprisingly, I got no answer. The future cannot be predicted; this illness is not predictable. He said that if I don't keep eating and waste away then I won't be well enough to return. I just have to do what I can to give myself the best possible chance of improving and hope for the best!

We also discussed the severity of my illness at the moment and the amount of time I'm ending up spending in bed. He said it was preferable to spend more time sitting upright, even if it means I have to take more pain medications, within reason. I need to slowly build up my tolerance to being upright with my legs down, because I need to be able to sit up for extended periods by September to enable me to return to Uni, and it's important to start slowly working on this now, because the systems obviously aren't working well but I need to prevent the total loss of the reflexes controlling my blood pressure and things. He likened it to astronauts who feel awful when they come back from space because suddenly their blood has to pump against gravity again and they have lost the reflexes/mechanisms supporting this, so it's hard to keep enough blood flowing back to the heart and up to the brain. I thought it sounded like a good idea to go to space if it was much easier for the body to pump blood around up there, but apparently he meant that it's important to prevent the loss of these reflexes- shame. So I need to start sitting up with my feet down for regular stints through the day. I think this will be manageable because I am already used to spending long periods sat up some days when out on my scooter, although I suffer for this at the moment, so need to find a sustainable amount that I can sit up each day (split into small amounts initially) and then try to build on this. My consultant and I are very aware that I'm at risk of becoming bed-bound, so we need to address problems and try to keep me functioning to a decent extent. I need to maintain the function I have because the less I do, the less I will be able to do, so I need to not wreck myself, but also try to keep my body functioning as much as it can manage. Finding this level is not going to be easy.

My consultant is going to see whether he can get me seen by the CFS therapy team near home-home (I've been discharged by the team near Uni-home while I'm out of the area) because if I go through the usual referral process via my GP I'd barely be seen before returning to Uni, and I need support with finding a baseline of activity that's do-able at the level I'm currently at, and would benefit from some physio advice.

The appointments have given me some confidence with how to move forward. I'm grateful to have a medical team who work with me to make the most of a difficult situation and help me through. This condition isn't going to go away overnight unfortunately, but I'm hopeful that I can start to take some small steps in the right direction now that things are a bit more stable.

The same evening (I know- pacing fail) I went out for dinner with some Uni friends which was really nice! It was great to catch up with them and hear what they've all been up to!

I had a really rough few days the beginning of last week, but I was pleased that I managed my travel and appointments without too much difficulty later in the week. I got back to home-home about 12 hours ago and I'm feeling rough, in a lot of pain and taking extra medications, but that's to be expected. Hopefully the payback will ease fairly quickly!

(I'm a bit behind with messages & comments on everything because I've been busy and haven't been at all well, so please bare with me. Also, I do now have an Instagram account: Jess_ME_CFS which I'm putting a very brief update on most days ..ish.. at the moment, if anyone wants to follow my ups and downs- and look at photos of my dog- on there)

Tuesday, 11 March 2014

A patient's guide to pacing

*None of the information given (anywhere on this blog) constitutes medical advice, I'm simply speaking from personal experience as a patient.*

Along with many others I advocate pacing to help to manage symptoms, but what exactly is meant by this?

In a non-ME/CFS context, people regularly refer to 'pacing themselves' when they are holding back from rushing in and doing everything all at once. They are spreading things out to make the workload more manageable/less overwhelming.

In it's simplest form, pacing to help with ME/CFS (or other fatiguing chronic illnesses) is just the same. The sufferer listens to their body and spreads out activities over multiple days, and takes things at a manageable pace.

However, pacing can also refer to what I call 'strict pacing'. This is what is often recommended to patients to supposedly enable them to control their symptoms better.

Pacing can seem like a benign idea, but strict pacing can totally take over and dictate your life. Let me explain..

In strict pacing, different activity levels are allocated different colours. I used blue for sleep, green for complete rest, yellow for low intensity activity and red for high intensity activity. What falls under these brackets is entirely individual.

Back when I was significantly healthier red was for walking anywhere, studying/lectures, getting showered and dressed in a rush in the morning etc. Yellow was watching TV or chatting or being on the Internet etc. Green was lying in bed doing absolutely nothing, properly resting, listening to either a relaxation track or possibly some music, sometimes I stretched this to include snacking (it makes rest time more bearable!).

When I filled in my first activity diary (colouring in a box for each hour of each day) it was clear that my sleep was disordered (I personally did a dotted line in blue for when I was attempting sleep but was awake)- I was awake late into the night and sleeping into the day or napping if I had had to go to a lecture etc. It also showed that I had a lot of yellow time, and initially, no real rest (green).

In each category, the different activities tended to be a fairly standard intensity, so I used times that I tried to abide by for each colour. For example, I think I started with about 5 hours red (high-intensity) time and 1 hour green (rest) time per day, aimed for 8 hours of (ideally night-time) sleep, and everything else could be yellow. Once I relapsed the levels became 3 hours of red and 3 hours green. You work these out by adding up all the hours of each colour you did in a week pre-pacing and then dividing this by 7. This helps the activity to be spread across every day instead of being concentrated in a few. This level can then be adjusted if it feels too high or low (but remember you shouldn't be massively pushing your limits) once pacing begins.

When I first started pacing, I used to plan each day out in advance, a week at a time, colour-coding hour boxes according to activity-intensity, planning in rest and everything I needed to get done each day. I would write: Shower and dressed (red dot), Uni (red dot), rest (green dot), TV (yellow dot) etc, so down the page I would have the column with hours, the column of activities and then a column of coloured dots, which would add up to the number of hours of each colour planned.

If abilities reduce during a flare or relapse, high-energy activities can be cut back and/or rest can be increased. This helps to reduce aggravation of symptoms but maintains some level of functioning. It's a conscious decision based on what you feel capable of. After a relapse levels may need to be changed fairly long-term. After a flare, it may be possible to jump back to previous levels, or it may need to be a gradual process.

If the condition improves, high-energy activity can be increased (possibly requiring an increase in rest too), or rest can be cut back. Notice this is *not* an and/or, just an or- do one or the other at a time. Allow time to adjust, then make another change as appropriate.

Once making increases, this enters the realms of Graded Exercise Therapy. Never increase activity by more that 10% each week- so 10 mins becomes 11 mins. Step back down as required- small flares in symptoms are to be expected with increases, but these shouldn't be such that they interfere with being able to do everything as planned. If symptoms flare significantly, step activity back down to the previous level.

Another important concept in pacing is breaking up each activity. Do a tiny amount at a time. Take regular rest breaks. Don't push through to finish something once you start, you'll feel much better at the end of the activity if you pace and take regular breaks rather than crashing having got it done.

Pacing needs to take into account physical, cognitive and emotional activity. These all impact on one another and use up the same finite energy. If you are upset, this is a high-intensity activity, and may mean you need to reduce the amount you walk that day, for example.

Pacing can help to explain to others in some circumstances. For example, explaining to my university department that I was pacing and had limited amount of high-energy activity, and I had had to reduce this significantly due to a relapse, helped to explain my need for an extension on coursework, whilst also demonstrating maturity and control. Explaining to friends that you can't go out, because you have already got too much on that day, rather than because you are busy at the time, becomes easier.

Sometimes, life isn't as rigid and planned a pacing presumes. Sometimes you have to make last-minute changes to your plan. Sometimes something unexpected comes up that simply cannot be ignored. If this happens then this should be calmly dealt with, other activities that day should be reduced/rescheduled if possible, extra rest scheduled if possible and if one day ends up using up more energy than normally allocated, demands the next day should be reduced if at all possible.

To pace strictly, decisions have to be made about priorities, and things often do have to be repeatedly put off (depending on ability level). Often decisions have to be made between one activity or another, because both would be too much, or would not allow enough rest time. Sometimes standards have to be dropped- is showering and dressing necessary today? Can the house go another day/week/month without being dusted/hoovered? Does the bedding need changing today? Is enough energy left for cooking or is a takeaway/ready meal needed? Can someone else do this to save me? It's important to look at what is really important to get done and where energy is being wasted unnecessarily.

With time you learn to adopt a more relaxed approach, but hopefully still abide by a lot of the principles. Everything just doesn't have to be written out, colour-coded and calculated any more. Obviously if the highly structured approach helps you and works for you, then there's no reason to stop!

Pacing is needed to avoid the push-crash cycle those with ME/CFS know all too well. We push ourselves to do something beyond our limitations and then suffer the consequences. But I don't always see that as a complete negative, if it helps to improve quality of life.

This is where it becomes tricky. Do I think pacing is a good tool to manage symptoms? Yes. But I also think it is restrictive and dictating. I felt that I had no spontaneity in my life when I was pacing strictly. I was having to turn things down simply because it didn't fit with my schedule. My pacing schedule became the enemy in a way. It felt like it was that holding me back as opposed to the illness. The illness didn't stop me having a long, fun day out with friends, the pacing plan did, and I found that hard to understand and accept.

Pacing is a management strategy. It is not a cure. If it was a cure, I would happily rigidly pace to make myself better, but strict pacing made me feel trapped. A more relaxed approach worked better for me personally. I tried to spread things out, but had the occasional day pushing things and then rested more (yes, ok, crashed) afterwards- but those days made me happy, and I think that's important too.

I've learnt a lot from pacing, particularly the importance of good quality rest, and I would encourage everyone to get a proper idea of what their weeks look like mapped out according to activity-intensity. It's a good way to educate yourself and sometimes helps to see a way forwards.

I'm now significantly more ill/debilitated and it becomes difficult to see a way to pace. Every time I leave the house now, it will inevitably cause a crash, but that doesn't mean I will opt to stay in my house all the time. Bathing and washing my hair is also beyond my limits and flares symptoms, but it doesn't mean it isn't necessary, even if I have had to accept a dramatic reduction in frequency. I do need to look at my current routine and see whether I can make any improvements though, particularly to make me feel like I'm living rather than just surviving, but my limits are such that identifying suitable activities is difficult. I spoke to my CFS team psychologist recently and she said it was good to think about a routine and reading some of Fighting Fatigue (by Sue Pemberton) might be a good place to start once I'm well enough, but for now she seems happy for me to just give it some thought. I'm not really well enough to be introducing much in the way of activity at the moment, but I'm going to give it all some thought at least. I just want to feel a bit more productive and want to feel satisfied that I've achieved something at the end of the day.

I hope this information is helpful to some. I would like to reiterate that I am *not a doctor* and this is *not* professional advice, it is simply what I have come to learn through being a patient.

My pacing plan when I was on around 5 hours red (high energy activity) and 2 hours green (rest) per day. Apologies for the hand-writing and yes it is rather Uni-focused.. The joys of being a chronically ill student I'm afraid!

Below is how I went on to plan my weeks- it's on an app called MiWeek, it was free on the iTunes Store when I downloaded it.. I assume it still is but haven't checked.. You just change the colour of the dots and they light up as each hour of the week passes. It's quite easy and I found it an easier way of doing things. I was on 4 hours green and 3-4 hours red per day at the time. Wed-Fri just hadn't been planned yet in this pic by the way- I hadn't scheduled my rest times for those days yet, it doesn't mean I didn't rest!

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, 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 ( 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! 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!