Tuesday, 30 July 2013


I know I only blogged yesterday, but I'm really struggling with my nausea right now, and this is basically a plea: is there anyone out there with any ideas to help with nausea?!

If other nauseated people come across this, the things I have tried so far are:

Mint and ginger. Mint does work a bit for me, I've personally never had success with ginger.

Acupressure wristbands (I have PsiBands because they're pretty)- they work to some extent for me.

Eating 'little and often'. It's always spouted at people with nausea but I really don't know how they expect people with nausea to be able to eat often.. Little I can understand but often is an issue..

Eating dry, bland food such as crackers or toast. A) what's the point, there's barely any nutritional value? B) no-one is ever going to find that appetising..

Over the counter indigestion remedies- may well not do much but worth a try.

Prescription Medications: anti-emetics, proton pump inhibitors, medications to speed up gastric emptying, IBS medications, motion sickness medications, inner ear condition medications etc. Try anything and everything if your nausea is having a serious impact. Cope without if you can because a lot of these are nasty meds and are difficult to tolerate with CFS because they often act on the central nervous system, but if you're really struggling with nausea do see your doctor and discuss these.

If you've tried all these and your doctor is basically out of ideas, your weight is worryingly low, your nausea is actually keeping you awake at night and you're getting pretty desperate, appeal for ideas on your blog ;)

[Edited to add: The specific medications I have tried are:

Cyclizene - no effect
Metoclopramide - SIDE EFFECTS!
Ranitidine - no effect
Mebeverine - no effect
Avomine - DROWSY!! (But worked)
Buscopan- no effect
Betahistine- promising at first, but sadly nope..
If anybody out there has found anything that has successfully helped with nausea, I'd be very interested to know what has helped!!]

Sunday, 28 July 2013

Blue badge

I decided to apply for a blue badge because my walking is now unbelievably painful, and I'm using poppy (my mobility scooter) a vast majority of the time now. I pretty much only walk inside, and then use poppy outside.

I realised applying for a blue badge would be a sensible thing to do when I was with my parents and we were taking Poppy places in the car and unloading her and getting her set up in the middle of busy car parks is not exactly safe. It's also not very safe to be so low down driving round car parks because you're not very visible sat on a scooter, whereas disabled spaces are positioned next to walkways.

I also realised that a blue badge would mean less concern about needing to drop me off places, my parents could park outside and when we decide to leave we could just get in the car and leave instead of me waiting for someone to drive round to pick me up.

My legs are very weak, and the weakness at the moment appears to be progressive to some extent, which is a little worrying. Walking is very challenging, it requires concentration and is physically difficult for me. I therefore felt that the time had come to apply for a blue badge.

I filled in the form beginning to end one evening and submitted it online. Some of the questions were difficult to answer, particularly with a fluctuating condition like mine. It wasn't nice to have to think about my failing mobility but I gave as much information as I felt necessary to answer the questions fully and accepted that what would be, would be.

I received a letter in the post within a couple of days asking me to attend for a mobility assessment.

I got a taxi out to the assessment centre, the taxi driver lifted poppy out and I got her set up and headed in. I was greeted by a friendly person on reception and we chatted a bit until the occupational therapist came to get me for my assessment.

I had no idea what to expect. I've never applied for anything in terms of benefits or anything so had never been for an assessment. The assessor was friendly though and put me at ease. He asked whether I had any medical information with me so I got some medical letters out that I had taken with me, and he spent a while reading through these and clarifying things with me. He then proceeded to ask me a lot of questions, some of them were very similar to those on the application form, others were seemingly unrelated to my mobility and were more about how I was coping day-to-day. There were questions about my conditions, how I usually travel, where I live etc.

We then proceeded to the physical assessment. I felt quite self-conscious with him watching the way I was walking and I was really struggling with my legs so felt quite clumsy and uncomfortable. My pain levels were quite high and I was having difficulty answering his questions while walking because I was concentrating on putting one foot in front of the other. We were going round corridors and there didn't seem to be an end in sight and I was really starting to struggle so I asked how much further we were going, he explained the route we would ideally complete and I looked horrified, so he explained that I needed to let him know if I couldn't continue. He then took me a shorter route to a flight of stairs where I found a chair- relief!!- and had a sit down. He then watched me ascend and descend the stairs which I felt I did quite successfully, and then took a seat again. He asked whether I felt I needed to sit down and I said yes. I was shattered, the staircase was quite wide, so it was quite difficult to drag myself up with the banisters. He asked whether my feet always turn in when I'm climbing stairs- it's not something I pay much attention to because I'm concentrating more on going up than keeping my legs pointing straight, but I do know it's a problem that is developing. The assessor was nice though, and waited until I felt ready to do the walk back. He took me back the way we had come which was reassuring for me, because I knew I could do the distance, although this time I was starting off more tired. I made my way round the corridor again, but this time he asked me to walk along the middle, away from the security of the wall. I coped ok with this, but I had said I thought my balance would be fairly ok, given that it was early afternoon. When I made it back to the room I collapsed into the chair, relieved to have made it back. I was then asked about how I was feeling and my pain levels etc.

I think this pretty much brought the assessment to an end. In total it took about an hour. It wasn't as bad as I had imagined it might be, although it brought it home how badly affected my mobility now is. I found the walking section really quite unpleasant because I was self-conscious, overly aware of the problems with my walking and I was feeling really quite unwell. I suppose that's the whole reason why I was there though, so it shouldn't have come as much of a surprise.

I was told I would hear in 7-10 days, 12 days later I contacted the council to ask whether it was just taking a while or whether I was meant to have done anything. I received a reply saying that my application has been approved and a letter had been sent out the day before.

I should be pleased that I have been awarded the blue badge I applied for, but it's just made me feel very 'disabled'. I know I am disabled. I know I can't walk far, I don't walk well and it hurts. I still don't want to admit these things to myself though.

To be awarded a blue badge you have to be considered to have a permanent disability causing you to be unable to walk or to have very substantial difficulty walking. You have to pretty much be deemed to be unable to walk 50m sufficiently well. You basically have to be very disabled- that's the whole point.

To be placed in this category is upsetting. I know I applied, and I applied because I had reason to believe that I was eligible and in need of a blue badge, but it doesn't make it any easier to accept someone's agreement that you are very disabled and you really do have a hard time walking.. I think in a strange way I would have been quite pleased to be turned down initially, which sounds completely mad I know, but I don't WANT to qualify for a blue badge. I want to be deemed too well to have one.

I do accept that I deserve it and need it deep down though. I didn't know how to feel when it arrived yesterday. I am pleased, but I do still find it somehow a little offensive.. I may need to go and enjoy the novelty of parking on some double yellow lines to get over it, haha. I'm sure I'll see it as a positive thing once it makes life easier.. it's just going to take a bit of getting used to. Free parking, can legally park almost anywhere, random discounts- finally found a perk of being chronically ill!

Update 28/07/13

Just thought I'd do a quick update about how I'm getting on..

Since my last post I've had a few more medical appointments.

I went back to see my GP about all my abdo problems, and in particular my nausea. He was very supportive and relaxed with me, and said that it is difficult to know what to do with my nausea because we don't know the mechanism behind it (and neither does anyone else) but he said that we can just keep trying. I was just pleased to hear I hadn't already exhausted all possible options- although he did say I've tried all the ones he normally uses. It was really important to find something to help because my nausea was severely hampering what I was able to eat.. He prescribed Betahistine (Serc), a medication normally used for inner ear problems/meniere's disease, it helped quite a bit, and has helped to get a bit more of an appetite back. Unfortunately I've messed up a bit with sorting enough of them for the holidays, but I'm doing ok-ish and do have a prescription for one more week's supply, so can get those, but if I need more I'll have to see a different doctor..

My GP was concerned about my calorie intake because I was really really struggling with eating at this point and only really managing half a nutritional supplement per day (150 calories) in addition to dinner which was the only meal I was really managing.. so we were both a bit worried and wanting to get my nausea down and my intake up as soon as possible!

The painkillers he prescribed me the time before are working really quite well, although they seem to run out between 5 and 5:30am, so I quite often wake up then in agony.. Needing painkillers certainly makes lie-ins less pleasurable!

I also had my regular check-up with my consultant. He was really pleased I had got my scooter and it was helping so much. He too was concerned about my nausea, and referred me back to the dietician. All the blood tests he had requested last time for specific conditions that cause muscle weakness had come back negative, so we discussed the fact that there's nothing currently identifiably treatable causing the weakness so other than doing what I can in terms of physio there's nothing else that can really be done. My consultant said I should discuss my mobility concerns with my physio, but we've already put together a physio plan, I was just hoping for an explanation or some hope that something could be done to make things better- but this is CFS we're talking about.. He did suggest I get a pedometer though, to better monitor how much I'm doing per day to try to keep it more stable. My legs are also covered in bruises at the moment, which apparently isn't uncommon in CFS sufferers, but I had blood taken to test all my clotting etc to make sure there isn't an underlying problem. He recommended I find a multivitamin with vitamin k in given my difficulties eating and to also help with clotting. I discussed the fact maxfax had mentioned considering changing my medications for my facial pain and said I wasn't keen and he said that he saw no reason for them to be changed if I was happy with things as they are and could tolerate the residual pain, so we agreed that unless the situation changes I would stay on gabapentin rather than changing to pregabalin and starting again with finding which dose I could tolerate and risking side effects and interactions etc.

I then went and spoke to the dietician and my weight had fallen below 45kg.. I'm nearly 5'8", so this is really really not good.. I explained the difficulties I was having with eating and drinking enough of the supplements so she has given me a large selection of different supplements to try in different flavours, by different makes, different number of calories per ml etc. I've got soups and milkshakes and juices and shots, so hopefully something will suit me.. She said she'd ring me after a week or so to see how I'm getting on with them..

Some of them are completely disgusting. I started off on Fortisips- I hated the banana, thought the strawberry was ok-ish and the peach-orange yoghurt-style suited me best, but I was only managing half a bottle per day. I then tried the raspberry yoghurt-style which was also quite nice. They did seem to be adding to my stomach pains though.

Since seeing the dietician I have tried:
• Pro-Cal Shots Strawberry: vile, but small, so can get them down..
• Fresubin Chocolate powder (mixed with milk): not bad
• Fresubin Strawberry powder (mixed with milk): unbearably yucky
• Vita Savoury Leek and Potato soup powder (mixed with water): edible
• Vita Savoury Golden Vegetable soup powder (mixed with water): YUCK
• Fortisip Compact Strawberry: alright
• Fresubin bottle Forest Fruits: a bit odd..

I found the hospital trip quite deflating. I couldn't see much reason for hope. A lot had gone downhill since my previous appointment but it felt like nothing could really be done. I felt very frustrated about the lack of answers about anything and was worried about my weight loss and felt overwhelmed by all the dietary supplements. I got home feeling exhausted, very nauseated from all the talk of supplements and felt quite down about the lack of optimism.

Thankfully I was soon feeling brighter. I'm now doing quite a bit better with eating although lunch is still sometimes a real struggle. My nausea is still a definite problem, but I'm coping ok, and at times am eating completely normally. Today my nausea has been really horrible again, but I've still eaten reasonably well- hopefully tomorrow will be better.

I've been away for a few days with friends and it was great- had a great time and managed really well. My CFS didn't cause too many problems and I was totally independent thanks to poppy :) I'm still incredibly pleased with poppy, I've really tested her over the last couple of weeks and she's performed amazingly- I'm so, so pleased, and she is still absolutely brightening up my life- things would be dreadful without her at the moment, but I'm having so much fun!

Sunday, 7 July 2013

Chronic pain control

Pain control in CFS is a tricky subject. The first time I said to a doctor that my pain was really bad he said that he wouldn't offer me anything stronger than over the counter painkillers because it would encourage me to do more if my pain was reduced, and I needed to do less because my body clearly couldn't cope. I did understand where he was coming from but I was having sleepless nights in absolute agony and was living in constant pain. I was also trying to complete my schooling, so cutting down on activity wasn't really an option, particularly given that I was newly diagnosed so the idea of anything like a wheelchair wouldn't have been something I could accept.

I lived for many months with the belief that CFS patients shouldn't have prescription painkillers to prevent overactivity, until my first severe relapse. I had never known pain like it. I lost consciousness because of the pain and came round in the hallway of my student accommodation (I had been trying to get to the bathroom), I crawled back to my room and lay in bed, feeling close to passing out on multiple occasions (loss of vision, dizziness etc). I called my doctors surgery and a doctor eventually rang me back, she refused to do a home visit, but prescribed some antiemetics and painkillers- Codeine phosphate, which thankfully a friend agreed to collect for me. It was the first time I had had any prescription painkillers and the relief from the pain was overwhelming- I practically cried when the unbearable pain finally reduced. Pain, particularly during relapses, can be incredibly severe. It can be very debilitating and can be the cause of other symptoms. I feel very strongly that any patient, including CFS patients, who experience this level of pain MUST have access to appropriate pain relief. Yes, explain the risks of side effects etc. Yes, explain that you're reducing the symptom without altering the cause so they must still rest sufficiently. But please, don't withhold necessary relief. Pain of that sort of severity is simply not bearable and it's just not necessary to put a patient through that. Patients need to feel that they can cope with relapses to reduce their dependence on doctors and give them a sense of control, but they often need access to medicines to be able to do that.

As my condition has deteriorated, my pain has become more difficult to manage on a daily basis. I have started anticonvulsant drugs to help with nerve pain in my face, and have very recently started taking a tramadol based medication (Tramacet), in addition to an antispasmodic, to help with abdominal pains. I am making necessary lifestyle changes to manage my pain and symptoms too- I now only really walk inside, around home and Uni, and use a mobility scooter the rest of the time- so I am not relying on medication alone to manage my pain. Medication and physical activity reduction combined have reduced my pain significantly, although I am still in quite a bit of pain, and walking really hurts. I am also doing some stretches, as directed by my specialist physio, to try to improve the tone of specific muscles in my ankles and legs to try to improve my walking and stop my left leg from dragging and tripping. I am increasing these very slowly, to try to avoid payback, but feel that it is important to try to improve these muscles if possible, to avoid greater pain from using incorrect muscles in the future.

I don't think doctors always appreciate the severity of pain CFS sufferers experience, and it's affect on our lives. It's up to us to help them to understand: explain the symptoms that are being caused by your pain, explain what it is stopping you from doing, give it a score out of 10 (and please don't say 10 or higher, that makes it a completely pointless exercise, assume that at 10 you'd be unconscious). Try not to get emotional about it to your doctor, just give them the facts in a way that they will hopefully understand, and work with them to come to a decision regarding pain relief- whether it's long-term management or just needing something to take as needed when the pain is unbearable.
You need to be able to stay in control. Chronic pain patients need to be treated appropriately- pain medication should not be withheld simply because the doctor is concerned about tolerance, dependence or addiction, if there is no reason to believe the patient they are treating is at increased risk. Yes, tolerance can mean higher doses are needed over time- but the medication is necessary. Yes, patients may become dependent- but what's the harm in that? Asthma patients are dependent on inhalers, diabetes patients dependent on insulin, etc. Pain needs to be managed too. Addiction is actually rare when pain medications are being used appropriately to manage pain, so it shouldn't be a huge concern, although it's obviously something to monitor for, but please doctors- don't become overly suspicious.

There are risks associated with not treating pain. Untreated severe pain can increase blood pressure increasing risks of strokes and heart attacks. Untreated chronic pain causes changes in the brain. Chronic pain can actually cause biochemical changes that cause depression. Dealing with chronic pain can cause situational depression. Living with chronic pain may not be deemed life threatening, but it is most certainly quality-of-life threatening.

Update 7/7 (Uni, mobility, doctors & abdo pain)

A few days ago I found out I've passed my university exams and am through to face next year. I felt very unwell on the day of the last exam and was unsure whether I would be able to sit it the day before, so it really feels like a huge relief and a definite achievement.

I've enjoyed the year as a whole, but it has been tough. I have had multiple relapses, all with incomplete recovery. The first relapse 8 weeks into the academic year was particularly brutal and necessitated a week off followed by several weeks of half days which wasn't ideal and came as a nasty surprise because things had been going quite well! My mobility has also been getting progressively worse throughout this year. Given the circumstances, I'm pleased with how well I've coped, even if there have been a few wobbles along the way. Juggling everything is not easy, managing a complex health condition is challenging, and some of my appointments this year have given me little reason for optimism. After a few difficult relapses I found the anniversary of my diagnosis a challenge this year in particular, and was grateful that my department agreed that I could have the day off to be at home with my family. In general though, I have managed to stay fairly positive, but realistic. Realism has had more of a place than optimism this year, it's been a case of taking things as they come and being positive about what I can achieve in spite of my limitations as opposed to having reason to believe things were about to dramatically improve, which clearly they still haven't. I see reason for tentative hope at the moment though, given that with a few rather fundamental changes, such as Poppy, my symptoms have recently become much more bearable. Buying Poppy was definitely the best decision I've made all year. Hopefully with a few adjustments which are currently still being discussed, my next year of Uni will be manageable, and enjoyable, with hopefully fewer flares, fewer relapses and more bearable symptoms. I'm not asking for miracles, although they would be nice, just a bit more stability would be good.

In terms of the here and now, I also had physio recently and he was pleased with how I'm doing, it's obviously very slow progress and there's a long way to go before any improvements will be at all noticeable, but hopefully in the future there will be an improvement of some sort. We'll just have to see how things go. The only way to know whether it will work is by giving it a go and sticking with it.

I've been back to my doctor and he's put me on some additional pain medications for my abdominal pain and there are concerns about my weight because of my nausea. He's prescribed me some sip feeds to try and help with some weight gain. Unfortunately Fortisip aren't the nicest tasting things, although I was expecting them to be worse. Some flavours are better than others, but they're all quite difficult to tolerate with nausea because they're so full of calories, and milky things aren't great when you're feeling sick either, but I'm giving them a go. I'm having some difficulty not only with breakfast but also with lunch at times at the moment, which is a bit worrying. I'm managing to get something down each day, but it's far from a proper lunch sometimes. I'm back at the doctors this week though so will discuss my nausea again and see whether there's anything else left to try.

I've been sorting out practical things for using my scooter, so had an assessment to allow me to use poppy on buses the other day. It was rather strange- they brought a bus round to where I live and I had to drive on, park in the disabled space and drive back off again, and then repeat this once. I wouldn't say I did it overly successfully but the assessor filled in a form and said my permit would be in the post within the next few days and sure enough it arrived a couple of days later. I went on the buses to my physio appointment and they didn't even ask to see it in either direction, but at least I had it so was following the rules.

I've found myself in rather a peculiar situation that I'm not used to. I can go wherever I want and do as I please outside, but I'm sat in my room looking at everything I ought to do, and am as disabled as ever, if not more so. I'm still very sick, even though I've got my freedom back. I am physically really quite incapable, and I'm very aware of this inside, but out and about on Poppy, my scooter, I feel capable and free. I still have to be careful because the stimulation of being out can be exhausting and I have to take sensory overload into consideration, but I'm not affected too badly by these things, so I can do quite a lot when the physical challenge of walking is removed. I'm also having to be more careful at the moment because I'm on higher levels of pain medication so it would be very easy at the moment to severely overexert and end up in a bad way with payback, so I do have to be mindful of that too. I do find things physically difficult though, so that's a warning sign even when my pain isn't as bad as normal.

I'm feeling really quite tired at the moment, and I'm so grateful to have Poppy because my mobility is really bad. Things are looking positive though: I have no re-sits to revise for over the summer so can have a fun summer enjoying all the things I've got planned :) and I can also spend some much-needed time resting and recuperating ready for another busy year!

I have 3 more medical appointments over the next few weeks but will then have some medical-appointment-free time which will be nice! I feel a bit bogged down with illness/disability-related stuff at the moment so it'll be nice to just escape and be me. Yes, I'll still be ill, and yes, I'll still be disabled, but I'll be able to put it to the back of my mind and just enjoy things within my limitations instead of constantly raking over things to prepare for appointments and assessments etc.

Another piece of news for today is that this blog has now had over 4,000 pageviews! Thank you to all of you for reading, and thanks for the positive feedback :) I really hope I've helped to raise some awareness of CFS and also helped some CFS/ME sufferers feel less alone. Some of these update-type posts are probably pretty boring for the vast majority of readers but I won't be offended if nobody reads them!