Coming to terms with things

The last month has been difficult beyond measure. The Coxsackie virus (hand, foot and mouth disease) that we had at the end of September has triggered an enormous flare of pain/fatigue/malaise symptoms which I have suffered with on and off since Maya was a baby, and I have been in uncontrolled moderate to severe pain since that time. I tried to bring it up with my GP on multiple occasions and have failed to get him to take it seriously whatsoever, therefore I’ve also been without adequate pain relief. It’s really difficult as I don’t have any of my past medical history on paper (I can’t even find any paperwork to do with it, either I threw it out in England which would have been idiotic but considering my mental state at the time understandable or it has got lost in the move), so I have no evidence to prove what kind of painkillers that I have needed to use to deal with these flares in the past (and documentary evidence that I have come off these drugs between flares between episodes which is even more important). Also the drug which I have found most helpful for this type of pain (a combined opiate agonist/antagonist called Meptazinol) isn’t licensed for use in this country which is frustrating). I hadn’t tried to put in place medical/rheumatology/neurology care because I had been doing so well physically for over a year now, and maybe naively I had hoped never to come back to this place. In retrospect this was a mistake, so I’m in a pickle.

I have my psychology and psychiatry prescribing appointments at the local Community Health Center and have generally had great care there. We moved our medical care as a family over to a different health center as we were advised to by Peter’s family and also had been recommended that there was an excellent pediatrician there, which we have definitely found to be the case. I have generally been extremely happy with the care that we have received from them, but as my psychologist put into words, I haven’t felt “heard” on this issue at all, which is very challenging. I decided to move my medical care back to the Community Health Center as I hoped it would be easier to co-ordinate my care if everyone was under the same roof. To this end I booked an appointment on Wednesday to see one of their doctors and try to work out something more effective with pain relief as Peter has now had to stop work temporarily to look after me and the kids because I am so incapacitated with this pain yet again.

It did not go well. I was extremely anxious as is to be expected after years of being fobbed off or ignored by doctors and other health professionals, but I tried so hard to go into this appointment with an open mind and not on the defensive. It didn’t help that the nurse who came to take my vitals but unbelievably grumpy – not just no smiling or engaging at all, but when I tried to make an effort and ask her how her day was going she kind of just made a dismissive noise in my direction. Not a great start for someone with a bit of a PTSD response around medical personnel (it might seem picky to bring this up, but actually I think even the basics of care should be done with respect and at least civil interaction, it helps, or at least it doesn’t make things worse!). And the appointment? well yet again I didn’t feel heard. I recognize that I am a very complex patient, and can sometimes be a difficult patient, but I always try to treat people with respect and listen to them, and it’s when that isn’t done in return that I really struggle. I found it hard to get across the things that needed to be said, and the doctor seemed to have little interest in really getting to the root of the issue. I came to him desperate, and having been trying to respectfully address this issue with my other doctor for the last month but not making much progress. He said that he would prescribe a mild muscle relaxer, and as I asked he would refer me to the pain clinic at Yale. No interest in referring me to a rheumatologist despite having two rheumatological conditions. When I asked what I was meant to do in the meantime about the fact that I am struggling so much with my activities of daily living, and that my husband had had to take time off work due to me having inadequate pain control he brushed the question off. He was also not interested in my concern that if I continue to experience uncontrolled pain and therefore such a low exercise tolerance, I am likely to end up in much worse pain long term due to destabilization of large joints – this being one of my main motivations in trying to get a handle on the pain.

Earlier in the week I had met with my psychiatric prescriber who had put me back on a low dose of antipsychotics, as this time last week I was mentally a complete mess. I am really struggling still, but I do think that the main reason that I was really not doing well psychiatrically was that I’d spent a month in uncontrolled pain and was still trying to do everything else that I usually have to do plus extra revising, all with very little help. I didn’t really feel heard at this appointment also – the medical model of care treats people in a very standard way – you are a list of symptoms to them, or you ARE the diagnosis, and when you have a psychiatric diagnosis or a fibromyalgia diagnosis people often stigmatize you and make assumptions about you, leading to conclusions being made without exploring the individual factors in a patient’s situation. This week has still been extremely difficult mentally as well as physically, but it has been more manageable as with Peter off I can rest when I need to and have support when I need it. It is hard not to wonder whether had the pain been dealt with earlier I might not have had to go back on these drugs. I’m not 100% sure by any means, and I know that the two times I have become psychotic have been preceded by bad pain flares so it may just be part of the whole picture, but going back on the antipsychotics feels like such an enormous step backwards. It’s so demoralising that I’ve managed to lose 20 of the 60lbs that this medication (and misery overeating) caused me to gain last time, and now all of that extraordinarily hard work might be so quickly undone. But it may be a positive step, if I am heading towards a psychotic episode, maybe it can be avoided and Peter and I and our psychology/psychiatry support can learn to avoid the extreme ends of the spectrum of Bipolar Disorder, and minimise the damage to myself and all of the people around me. Again, the unknown.

On the subject of that damage, I am extremely sad for myself that this is happening, but it’s so much more than that, I am devastated for my family also – for Peter and the kids, and for my extended family. It’s just so horrible having to go back to this unequal carer/sufferer role in our marriage, and to start having to show the kids my limits again. Having to say no to things that are so normal for the average mother, and that have become more normal for me over the last year is truly heartbreaking. Thankfully we’ve been able to protect the kids from a lot of it as Peter is off work, but as he said the other day, “a month ago it felt like anything was possible, now we’re back to complete unpredictability and the unknown”. I know that Peter is going through many of the same emotions, but I am finding myself flip-flopping between the sadness-grief spectrum and the anger-rage spectrum. It’s also a minute-to-minute battle against bitterness, as I see people all around me taking for granted things that I’m not able to do yet again. I can’t express how much I don’t want to be a bitter person. It’s a pretty exhausting place to be, and in some ways the fact that I was doing better for a while makes it harder to be struggling to this extent again than it would have been if I hadn’t had the good time. I am grateful that I am a bit better physically that I was this time last week, as the idea of living long term in the levels of pain that I had then was unbearable. However not knowing what the future holds is extremely tough, and add in to the mix that I’ve got my first major exam for working towards getting my Connecticut Nursing Licence and things just become a bit ridiculous.

There are some positives though. Things have been worse in the past. It might not sound like a positive but I’m so grateful that we’re only functioning at about 60-70% of how bad the pain has been during previous flares. Also, I have more of a long term view – if it’s gone away once, it might be possible for it to do so again. I have spent the last (relatively pain free) year working out regularly, so my joints are more stable and some things are less painful than they would have been when I was so deconditioned from long term poorly controlled pain. And our relationship is stronger and wiser than it was, so where we have had some extremely tense moments, disagreements and arguments about the situation over the last few weeks, we are generally managing to bear with each other in our suffering. We’re learning by trial and error to allow each other to express our very strong and unpleasant emotions about the situation without judging each other for it or taking it personally or making it about us. This is pretty revolutionary. If this was a year ago, it quite possibly would have finished off our marriage, since the year before that we had a similar episode (which progressed and ended in psychosis) which caused us to end up separated for quite a while. Chronic illness of any kind takes a huge toll on relationships, and so many people in similar situations end up divorced. I very much want to remain married.

Even more than those positives, being more mentally well and physically well combined for the last six months has enabled me to learn and re-learn quite a few things about me as a person, which has been extremely helpful in terms of my view of myself, and also my ability to be kind to myself when things aren’t going well. I hadn’t realised how much of a negative effect the anti-disabled-persons rhetoric which the current UK government uses had affected me, and how those attitudes had seeped into the deepest parts of me. So much of Western society bases your worth on what you can achieve and contribute, and when you’re not able to do much tangibly it’s hard to feel like you have much worth. Add to that the general opinion of the government and their agencies that the vast majority of people with both physical and mental health problems are workshy malingerers, and it’s a recipe for psychological disaster. Even though I was always trying to live the very best I could in the situation, for years thoughts haunted me like “maybe I am just lazy”, “maybe I just somewhere deep down don’t want to work hard and want to sponge off the system”, “maybe it’s just all in my head”, “I wish I was a less negative person”, “maybe if I ate better, took more supplements, exercised more, lost some weight I might be well”. It was a constant drain on my psyche for the whole of the time that I have been unable to work, which is now nearly 9 years. Now that I’ve had 6 months of pretty good physical and mental health? All I can say to that is NO NO NO NO NO!!!!! I have LOVED being able to work hard, when I’m well I have no problems taking responsibility, contributing to things, and being enthusiastic. I am in no way lazy. When I’m not depressed I’m not actually that negative a person. I’m doing (or have tried and found no benefit) literally everything I can think of that is suggested in terms of natural ways to improve health and especially chronic pain, and am still in chronic pain and battling mental health problems.  And working? Well, if the pain stays at this level, it’s going to be very hard to do that in any meaningful way, at least in the areas which I want to do. And when it was 30-40% worse than this? There is ABSOLUTELY NO WAY THAT IT WOULD BE REASONABLE TO EXPECT SOMEONE SUFFERING LIKE THAT TO WORK. Honestly, fuck you Ian Duncan Smith, I hope for their sake no-one close to you develops a chronic physical or mental health problem.

So there you go, that’s why I’ve not been out and about much for the last few weeks, or have cancelled things at the last minute, or not been at my usual classes at the gym. I’ve not been shouting about it on social media for a couple of reasons – firstly for a long time I was in denial that it was happening, and secondly because compassion fatigue is a very real thing, and I find it very hard to not be anxious about this as even I myself had an initial “this again, are you SERIOUS?!” reaction to it. I’m hoping for improvement, but in the meantime Peter and I would be grateful for kindness and encouragement, and maybe a bit of practical support when we decide that it’s time for him to go back to work. I’m not enjoying being stuck in the house a lot of the time at all, and would be very happy to have people over more than I have been able to up to now!

If you read to the end of this thanks for persevering!

Jenn

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~ by jennkeast on October 31, 2015.

2 Responses to “Coming to terms with things”

  1. Hi there Jen. Sorry to hear you are so unwell again and maybe will take some time to recover. Its hard not to just be sympathetic as I guess many are, because I feel this problem of chronic pain you are facing deserves so much more than sympathy. I have had two close friends who in the early 80’s fought with doctors to accept a diagnosis of ME. Both of them lovely women who worked hard, brought up their children shared in our schools activities and my latest friend who lectured with me. At times they were both completely laid flat by the condition and quite literally couldn’t lift themselves out of bed. We helped with child care and school matters and more recently by teaching for my latest friend and allowing her space at home to write and recover. All that you say in your blog is so similar to what they faced, they were considered lazy, work shy, trying it on when quite clearly no one would ever want to be experiencing what they were going through. I feel as if you are in a worse position then them as you also have the bipolar to manage. It’s a huge challenge for you.

    Despite that you have some real positive parts to your blog, you are stronger after a good year and you can trust I think that this is a process of illness that has its ups and downs and will move on and maybe away for a time. That is something to look towards I think, and you seem to be doing this. Also you say that you are accepting that you have done as much as you can to be as well as you can. Quite recently I had an interesting discussion with my own GP who I like very much. My cholesterol levels were very high and he wanted to give me statins. I negotiated with him trying all the things that you hear reduce cholesterol. I kept food diaries and exercised, I already don’t drink and after a month we did the tests again. The bloody cholesterol had gone up and he said you already do everything you can to stay well, there is nothing I could tell you to do to improve the situation except use the statins. What he said that has really stayed with me is that we can’t fight our genetics.

    That’s a little how I feel about you Jen, and also some of my own family. Dave can’t fight his genetic makeup, none of what he is or does is his fault. Your pain and condition and the bipolar are not of your choosing or creating, nothing you have done has made this and you certainly don’t want it. Despite all of the challenges you face you have done remarkably well to bring into the world and parent and love three children. I hope at times you are really proud of this, your legacy to the world is them and there is nothing as important as they are.

    You are right that ignorance about disability causes many people to judge individuals and there is a view held by many that we are valued by what we contribute in other people’s terms to the world. But I have moved beyond that and in many ways it was David who helped me to get there, I know from being with him that it’s impossible to predict tomorrow, that everything changes and is in a state of flux, that what really matters is that we care for each other and accept both our own and others limitations and that most importantly we are kind. When I retired from work last year one of the teacher educators that worked for me came to say goodbye, he said you have been a great manager Alison and I have loved working with you, but most of all I will remember that you have done all,of this withkindness. I still fill with tears when I remember that, because to be kind to ourselves and others is what is needed and I am glad in some way that I achieved that at work.

    Harder though Jen to achieve that at home where we are so emotionally involved. I hear you saying you are being kinder to yourself and my hope is that you have around you people now who are kind to you as you get better and give you the practical and emotional support you need while you are in pain. Also Jen, I notice you can still write with passion and humour about the crap you are facing and that is lovely to witness. I will be thinking of you and hope others are doing more.

    Alison

    • Thanks Allison. Kindness, yes probably one of the most important things in the world, and one of the hardest. We can only try, thanks for a very kind comment again, xx

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