Saturday, 19 April 2014

10 Tips for trips away with chronic illness & update

10 Tips for trips away with chronic illness

Trips away may help recharge healthy people's batteries but can be exhausting for those with chronic illness! Having travelled around a bit recently (see update below), it seemed appropriate to share a few tips I thought of for trips away with a chronic illness:

1) Be realistic about what you can manage. Pushing your limits too hard early on can mean the end of the trip away is far less enjoyable. Don't save the activity you're most wanting to do until the end of the trip incase you're feeling a lot more unwell by then and less able to enjoy it! Try to pace yourself.

2) Ensure those you are going away with are aware of- and understand- your illness and the limitations it imposes.

3) Make sure you take/pack any medications, mobility equipment etc you may need. Take sufficient 'as needed' medications with you for if you need to be on the maximum dose the whole time you're away; you'll almost certainly bring some home, but you won't have the worry of running out.

4) Ensure your accommodation is suitable for your needs when planning the trip (not more stairs than you can manage, etc). Get a room in a suitable location (where it's likely to be quietest/is closest to where you'll be wanting to get to).

5) If certain activities are part of your usual routine, pack whatever is necessary for you to have the same routine while away. For example, a book if you read before bed, or headphones and music player if you listen to music.

6) Pack ear plugs if it might be noisy overnight or you are sharing a room with someone who might disturb you.

7) Pack energy-saving things like dry shampoo if it's what you'd usually use to allow you to get out when you don't feel well enough to properly wash your hair.

8) If travelling by car, a pillow and blanket might help you get more comfortable. Maybe some slippers/warm socks too so you can take your shoes off and put your feet up.

9) Don't feel that you have to keep up with everyone else. If they're doing something you don't particularly fancy, or you're feeling particularly unwell, stay behind and rest.

10) Make sure everything that needs to be done in advance is done (by you or someone else). Do you need to book assistance for train travel? Do you need to check whether somewhere you're wanting to visit is wheelchair accessible? Do you need to ring the owner of the property you are staying in to arrange how to collect keys? Do you need to plan the route you're going to take? Do you need to check what time you can arrive at your accommodation? Making sure such things are sorted in advance can help things go smoothly.

Update

Sorry I've neglected my blog (,Instagram, messages and twitter) a bit recently! I have had practically no Internet for the last week and since my last blog update I've been uncharacteristically busy! I hope all my CFS/spoonie friends are doing ok!! I will try to catch up with everything soon..

I visited my university city for a couple of days to see an event with a friend and went out for a meal with some of my Uni friends for one of their birthdays. I had a fantastic time. It was lovely to see people and the event was amazing. I then visited my grandparents with my mum and dog which was nice- I saw a school friend and various family members as well so it was good to catch up with everyone and it was a nice few days with some little trips out. I then went away with my parents and dog which was enjoyable- good to get away and see somewhere different. We didn't go far but it was nice and peaceful and somewhere different to explore a bit.

I'm now home and it's good to have WiFi again and lovely to be back in my own bed!

It's been a really nice few weeks, but my illness has predictably interfered at times.

Just before going away I had a problem with a change in medication (from gabapentin (Neurontin) to pregabalin (Lyrica)) for chronic facial pain/general nerve pain. I took 2 doses and ended up asleep for an entire day feeling incredibly unwell, out-of-it and my vision was off. I felt dreadful. I didn't have time to see whether the effects would wear off because of impending travel, so I quickly swapped back to my previous medication and the disaster was averted. I do still need to re-attempt the change because I need to know whether the medication I've been on for ages is contributing to my abdominal pain. The new medication did seem to help a lot with my pain in general, but I couldn't judge the effect on my abdominal pain from only 24 hours spent almost entirely asleep.. I will probably try again at this dosage and if the side effects don't reduce, will see a doctor and get lower dose capsules prescribed and see whether they help.

This probably sounds trivial, but I've also had a mouth ulcer on my tongue which was painful. I get them occasionally, but this one seemed particularly evil and made speaking and eating awkward. It's healed now thankfully- phew!

I've also had a cold, which has developed into a bit of a chest infection (which often happens because I'm asthmatic). I'm still coughing and still a little congested. I felt absolutely awful for a few days, but am slowly coming through the other side. Colds are pretty scary with CFS because there's the possibility they'll cause a flare, or worse, a relapse, but thankfully this one doesn't seem to have set me back much (fingers crossed..!).

Then there's the obvious CFS. It's been ok-ish. Up and down with some really bad days, but generally I've been doing alright. I've been able to leave the house (in the car/on poppy- my mobility scooter) most days, which has been great. I'm exhausted now, but at least I've had a good time. I have undoubtedly pushed things a bit too hard for too long while away so payback awaits, but hey, got to have a bit of a life sometimes..! I was starting to really suffer the last few days, but am home now, so can focus on recuperation.

My brother is at home with us for the long weekend, so I might keep pushing a little bit longer to do a few things with him, but we'll see. I'm in a lot of pain today, so it depends whether that eases.

So overall things have been going ok. I've been able to get out and about quite a lot which has been great, but I'm suffering for it a bit now.

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!







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 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!


Monday, 17 February 2014

Frustration of "normal" results and update

Frustration of "normal" results

I remember the appointment in which I was first diagnosed with ME/CFS- the doctor started by saying 'according to your test results you are a very healthy young lady', I remember my heart dropping, thinking I was being disbelieved and I wasn't going to get any answers, but then I received a diagnosis of CFS (it's not currently possible to test 'for CFS', it's a diagnosis of exclusion so everything they test for comes back normal by definition) and remember actually feeling relieved. I didn't know then what it would mean for me, I was just pleased to finally have an answer (of sorts), it felt good to finally have an explanation for why I had been feeling unwell for so many months.

I've had lots of tests come back normal over the years- some I've desperately wanted to come back normal, some I've expected to come back normal, some have been unexpectedly normal and on occasions hearing 'normal' has been frustrating and disappointing.

I have recently had my ultrasounds (abdomen and Doppler ultrasound of liver and portal system) and to my absolute dismay they were normal. I just cannot believe with the severity of my abdominal pain and nausea, my inability to tolerate supplements/some foods, and the amount of weight I have lost, that neither my gastroscopy nor my ultrasounds have shown anything wrong. I just want someone to be able to tell me what's wrong and what they're going to do about it. I really do feel that my weight and nutrition are part of why I'm not improving/am continuing to deteriorate at the moment, so I'm desperate for someone to be able to help!

It's so annoying to hear 'normal' when for once you just want them to find something fixable. I remember when I was found to be iron deficient and severely vitamin D deficient at one point- I was so hopeful treatment would lead to an improvement, sadly it didn't, but it's strange to actually want specific problems to be found, but it's because I want to be fixed, I'm desperate to get better. I've been tested for lots of conditions over the years, as my symptoms have accumulated and morphed; some potential diagnoses have seemed to fit my symptoms really well and I've thought everything was going to fall into place and things were going to be fixable.. Sadly it's never worked out.

It's very difficult to be so broken whilst also currently unfixable. 'Normal' is not always nice.

Update

Well, where do I start...

Last time I did an update I had just had my gastroscopy and was in the process of taking time out from Uni.

I came down with a bad cold/infection soon after my gastroscopy, so got back to my parents home having left Uni and barely left my bed for a week; I felt incredibly unwell. I was meant to be returning to my Uni-home for a few days the following week for a psych appointment and my ultrasounds but wasn't well enough to travel in time for my psych appointment so I asked her to ring me and I updated her on what had happened. I did manage to get to my ultrasounds thankfully.

It made me wonder how ME/CFS sufferers are meant to know whether they have a cold or the flu when I have every symptom of the flu apart from sneezing on a daily basis...?! I'm fairly sure it was just a cold/sinus and throat infection on this occasion, but it did make me wonder.

I have also been in contact with my dietitian. I am simply unable to tolerate any supplements, so am having to attempt to put on weight through food alone. At the moment it's going ok, but I'm not really making much progress. I have to weigh myself weekly and ring my dietitian in 4 weeks time, or earlier if my weight drops at all. I'm not really sure how I'm going to get back to a healthy weight without any supplements to help, but we'll see.. Hopefully things will pick up and I'll start to see some real sustained progress.

The cold has caused a further deterioration in my condition. I'm now spending a lot of days in bed with evenings downstairs on the sofa. I'm requiring a lot of help from my mum who brings me food and drinks regularly. I can no longer shower because of dizziness/problems being upright. Bathing is difficult, exhausting and exacerbates symptoms, but is at least lying down and I can take as long as necessary. Life has got really quite challenging. But I've had a couple of meals out in recent weeks and have had a couple of days where I have spent time with friends.

I 'managed' a trip down to stay with my grandparents and brother (with my mum), which has been nice so far. I say 'managed' because I ended up awake in agony basically all night (<1.5 hours sleep) the night after the journey because of massive overexertion (being sat up on my scooter, without the backrest, for hours and I had a bath before travelling). But it's been nice to see family and have a change of scene, and a friend came to see me yesterday which was really lovely. I have had a day in bed today, partly because I'd had the evening of travel, night awake and then the day with my friend so was in a bad way and in need of rest, but also to rest ready for tomorrow (well technically today..) because I'm going to a spa for a facial and to sit in the hot tub/lie on the loungers which will be nice. I probably won't be able to swim much but I'm sure it'll still be a nice day. I feel in need of some pampering. I've had a bath tonight ready to go out tomorrow but am now lying awake in pain as a result. You just can't win with this illness.

My temperature control is now completely broken which is proving difficult. At home I have a fan by my bed for when I overheat but I don't here. I'm constantly changing from summer pyjamas to fleecy winter ones because one minute I am burning up lying uncovered, the next minute I am freezing cold despite being wrapped in a duvet.. it's all very peculiar.

I'm still waiting to hear about my falls/faints referral and haven't heard back about my PIP claim at all yet (I checked and they have received my form). Things are looking quieter at the moment appointment-wise over the next few weeks which is nice, apart from it means I don't get to see my Uni friends which is a shame.

I can't think of anything else at the moment so take care everyone and I will update again fairly soon!

Thursday, 6 February 2014

Time to Talk Day- mental health awareness

It's Time to Talk day in the UK- raising awareness and encouraging people to speak out about mental illnesses.

Yes, this blog is normally exclusively about illnesses that I personally suffer from. Yes, Time To Talk is about mental illnesses, and no, I have not actually been formally diagnosed with a mental illness at any point in my life. I do, however, have people close to me who suffer from mental illness, I currently see a clinical psychologist because of the psychological affects of my physical health condition, I have a very close friend who is a mental health nurse and I do feel that the stigma of mental illnesses desperately needs to be broken.

1 in 4 people in the general population will suffer from an episode of mental illness at some point in their life. This is even higher among those with chronic illness (1 in 2 or 3 depending on which stats you read). Nobody is immune to mental illness, and it's something no-one should feel the need to hide. Mental illness should be given the same respect that physical illness gets, after-all, people do die from mental illness!

I have made no secret of the fact I have had depressive symptoms over the last few months, and maybe I have at times had diagnosable Clinical (Situational/Reactive) Depression, although this has not been diagnosed to my knowledge. My physical health has challenged me to an extent I have found very difficult to cope with mentally, and I'm not ashamed to say that. I do remember questioning whether I should mention my involvements with a psychologist on my blog though, and the fact that I even questioned that shows that there is still stigma surrounding mental illness. I remember feeling appalled by the suggestion that I had an eating disorder, and yes that was partly because it was wrong and I didn't want to be misdiagnosed, but it was also partly because I was scared people would think it was my own fault and putting on weight was under my own control if I had been diagnosed with an ED. If I had an eating disorder it STILL wouldn't have been my fault and it would be EVEN LESS under my control. The situation would actually be even more serious than it is as it stands, because I am able to co-operate with my medical team and openly discuss my difficulties; if I had anorexia or bulimia, I wouldn't necessarily be capable of that until I had psychological therapy.

I remember going into my first psychologist appointment and admitting I was feeling desperate and saying I felt like I couldn't cope with any more, I was at the end of my tether. Over the next couple of appointments we discussed the fact that I had become very oversensitive, irritable, wasn't feeling myself, was deeply upset about my situation, and felt out of control of my life. I remember being asked whether I felt suicidal, which I never have. I remember the fear in the lead up to my first appointment that I would be diagnosed with a mental illness if I admitted how I was feeling. I knew this was my opportunity to be honest and get some help because I had noticed my mood slipping over the previous few weeks, as it has done on a couple of occasions in the past, but the idea of being diagnosed with depression scared me, for several reasons. I was scared about who I'd tell, what I'd tell them and how they'd react. I was worried people might judge me or treat me differently. I was worried about it going on my medical record and doctors putting symptoms down to mental illness in the future, or taking the symptoms of my physical illness less seriously because they thought it was partly caused by mental illness. I was concerned current or future problems would be wrongly deemed psychogenic and not fully investigated or appropriately treated. I was scared my future doctors would have a bad attitude towards patients with a history of mental illness. I was scared it would mean my current doctors would see beyond the bubbly, happy, upbeat personality they nearly always see. I shouldn't have had those fears. But those fears exist because of the current stigma surrounding mental illness. It's so important that this ends because people must not be prevented from seeking help!!

Psychogenic symptoms/diagnoses are very misunderstood by both some patients and some medical professionals. These diagnoses DO NOT mean you are making it up. The symptoms are very real. The patient isn't a malingerer. Just because the symptom is 'in your head' doesn't mean you're saying something is there when it isn't, it simply means your brain is creating a symptom without physical cause. The symptom is just as real, just as severe, and just as worthy of medical attention. A diagnosis of Atypical Facial Pain vaguely floats around in my notes, even though the pain has actually been diagnosed as being a direct result of my CFS. AFP is largely believed to have a psychogenic cause, I could kick up a fuss and probably get this diagnosis removed/changed, but why?! Practically all chronic pain is psychogenic to some extent- it's our brain wrongly creating pain and learning pain pathways that's the problem. It's unlikely that there's constantly occurring physical damage. I take gabapentin for my facial pain, it down-regulates signals from the brain. It works, and that's all that matters. It doesn't stop the facial pain completely, but it dampens it down to the point where it has little affect on my life. Most pain medication works in the brain. The sensation of pain is created in the brain. All pain is 'mental' to some extent.

I don't feel qualified to discuss what depression feels like because I've never been diagnosed and I've been reassured that my feelings are totally understandable, to be expected and in proportion given what I have been going through in recent months. I therefore feel that it would undermine people's experiences of true severe overwhelming depression. I would, however, encourage people to watch this video http://youtu.be/XiCrniLQGYc which describes what depression is like, using fantastic imagery of a black dog. Obviously there are lots of other mental illnesses, but depression is common and is the one I have most experience with.

I do know how it feels to be a close friend to someone with severe depression though. I have a friend who has had suicidal thoughts in the past. I have been the friend on the other end of the phone/computer with someone sobbing at me feeling utterly desperate, and I didn't know what to say or do. But I listened, I didn't judge, I tried to help my friend see things in perspective, I urged my friend to seek help, I stood by her, and I'm happy to say that she still has her ups and downs but she is doing well recently, although I'm aware that it is a constant battle. I'm sure she will read this and I hope she knows I will always be here if she needs someone. I'm sure I've said the wrong things at times, and maybe there were times when I could have done more, but nobody is perfect. It's hard to be the other end of the phone when someone says they don't want to go on living and then hangs up and won't answer the phone again and you're hours away, but I don't hold my friend responsible for what they put me through, it was the fault of the illness, not the sufferer. That's what friends of those with depression must always remember. We just have to try to stand by them best we can until we get our friend back!

Mental illness is an invisible illness, just like physical invisible illnesses and I therefore feel that we face many of the same challenges. It can be hard for others to understand and appreciate what we're going through because there are often no outward signs- we can look perfectly well at times. The illnesses can be hard for non-sufferers to understand and relate to, they simply don't know what it's like, which can lead to the sufferer feeling alone and isolated. People can struggle to know what to say, and they sometimes say the wrong things, which can sometimes lead them to say nothing. Knowing people care, are there for you and helping you to feel loved and appreciated is really helpful and helps to guard against major loss of self-esteem which often results from these illnesses. Our illnesses isolate us at a time when the support of others is incredibly important. Our conditions are often unpredictable and can be debilitating, and we may need others to take them into consideration. I therefore feel that all those that suffer from long-term illness, physical or mental, can provide empathy to one another to some extent.

A lot of ME/CFS sufferers are always very vocal about the fact CFS is not a mental illness, and I do totally agree, I think a physical cause will be found and certainly there are physical changes demonstrated to result from the condition, but I think people should be careful about what they say. We are all in this together! Those with mental illness do sometimes get CFS-like symptoms, and they can be just as debilitating for those people! I totally agree that we need those that are being researched under the label 'ME/CFS'  to have ME/CFS and not a mental illness, but they also need to have not been misdiagnosed when they are suffering from other conditions either. Plus, we need to be careful not to stigmatise mental illness further, particularly given that a lot of people with ME/CFS will be suffering from co-morbid mental illness as a result of the condition- it is debilitating, life-changing and often painful- the risks are therefore high. We need to be careful not to give the impression that CFS would be a lesser condition if it were a mental illness rather than a physical condition. Both are equal. Just because something is physical doesn't make it more serious, more real or more debilitating.

If anybody ever needs to talk, with problems big or small, or you just think I might be able to understand what you're going through, do feel free to message me over on my Facebook page (www.facebook.com/jesscfs), I'm always willing to chat and keen to hear from people. Support and take care of those around, but most importantly look after you! Seek help as necessary, don't suffer in silence and hopefully one day the stigma of mental illness will be a thing of the past and it will be given the same respect and treated with the same seriousness as physical illness.