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)