Going out? maybe…or maybe not; in which I discuss problems booking out the wheelchair taxi service

Going anywhere is just getting harder and harder. I’ve been using a fantastic alternative travel service (it’s a social enterprise, so I’m praying it will continue through the Social Care mass extinction we are seeing at the  moment). The driver has been able to come to the door, manhandle the wheelchair into the street and brace it as I stagger across on my crutches and get into the chair for the short trip down the hill. Then, they have been leaving me next to the accessible transport vehicle, and going back up to the house to collect my youngest in her car seat. She is so good, most babies wouldn’t stand for it, but she happily goes along with this, gets strapped into the vehicle, then they get me in and strapped up, and away we go. On the way back, we reverse the process.

Well, not any longer. As if things weren’t difficult enough, they have changed management, and re-risk assessed all their clients. I was told that I now require two drivers for each trip. One to take care of me in the wheelchair, and one to carry the baby seat. Apparently, this now has to happen simultaneously. The difficulty is that clearly they don’t have a whole load of drivers sat around all day- they are already booked out on jobs. So it is now even harder to book out the transport that I need.

So this week I was due to go to see my Physiotherapist. I couldn’t go, because the transport company only had one driver available and I needed two.

Just another reason to get brought down by the mundane hassles and constant struggle my life has turned into.

A Little Knowledge is a Dangerous Thing- in which I discuss Medical Student Syndrome

Dear Reader,

I am generally attempting to take the recent turn of events which resulted in my using a wheelchair with good humour. However, there are circumstances in which it is difficult to be cheerful and polite to people. What follows is an example of one such circumstance, and I hope it is of value to you when you next counsel a friend or, if you are in the helping professions, offer advice.

It relates to something which I will call “Medical Student Syndrome”; I am sure this is not a syndrome which affects medical students alone, but I am sure medical educators would give a number of examples illustrating the point I’m making!

I have a dear friend who also happens to be a medical student. I think she is amazing. She is a Mum, and does a great job with her lovely kids. She works really hard and has completed her education whilst having her kids. She is a kind person, who really feels called to helping others, and is literally putting her money where her mouth is by going back to college as a mature student to study medicine.

She called round to see me the other day. As is sometimes the way, she seemed more appalled by what has happened to me than I am. She behaved as if what has happened to me is tragic, and i hate the ‘tragic-crip’ narrative almost as much as the ‘super-crip’. Sometimes it’s hard for people to understand that although this is kind of new and shocking for them, I’ve been living this for nearly a year. I haven’t exactly made peace with it, but I don’t find my situation tragic. I have a lovely family, I have lots of support, I don’t feel ill so much as injured- I’m in pain but I don’t have flu. I try to be mindful in my daily life and squeeze joy out of the brief periods of activity and the time I get with my kids. Viewing my life as a tragedy disempowers me- assumes I’m not as capable as before. I may be tired, in pain, and not leaping around, but I’m still capable of everything that’s important and I wouldn’t give up my family for the world.

She looked appalled as I told her the result of my recent assessment. But the part which shocked me was when she said

“…but that’s wrong! I’ve just had a lecture in Physiotherapy and Occupational Therapy- and they were very clear that ‘if you don’t use it, you lose it’! you must get out and about!”

Now, where do I start.

  1. Attending a lecture on something does not make you an expert. It is hard for some very academic and bright people to understand that all their learning may not be sufficient to make a fully balanced and nuanced assessment of a case. That comes with years of learning, academically, or on the job, or with lived experience. It is easy, as a student, to see your latest studied condition everywhere- it is like internet self-diagnosis is for the general population.
  2. Other professions hold skills that are not taught as part of the Medical training. Some people believe that Doctors approach Gods with their learning, understanding and compassion. Some of these people will be your patients, and they will be sorely disappointed with you when they discover you are all too human. Some of these people become Doctors, and I dread to think what happens when they do, but I think that misunderstanding the benefits of the multi-disciplinary approach may be the least of them. When working as part of a treatment team, it may be the unqualified member of staff that the patient has opened up to… It may be the ward domestic that holds the key to understanding this individual. Shock horror, it may be the patient themselves who can inform you of their condition better than any mentor or textbook! Do not assume you are superior to other members of the team just because you are senior.
  3. Some professions actually hold better solutions for an individual than the medical establishment. We’re now approaching heresy, I know. Indulge me, kind medical student. In my case, unless I go for the surgical solution with the terrible long rehab and low chance of ultimate success, it is the PHYSIOTHERAPIST who is the treatment team lead. NOT the doctor.
  4. Without access to the case notes, best not to speculate. I love my friends. And people who know me would describe me as an open book. But what I have done with the health professionals involved that I make every effort to avoid with family and friends is tell them exactly where it hurts, how much it hurts, how long it hurts for, what the recovery period from the pain spikes is, and what that means for my daily activities, this is information I choose to share in the context of relationships that can effect change.
  5. As in Medicine, other professions have specialities with different approaches.My friend was taking the brief introduction to physiotherapy and occupational therapy in neuro-rehabilitation, and applying it to my musculo-skeletal condition. There are completely different approaches to take in this situation.
  6. Be my friend, or my doctor, but don’t try to be both. It is always good to be mindful of boundaries in relationships. If you’re my doctor, then I would be surprised if you invited me to your house socially (even if because of Transference I would quite like to be your friend). If, because of Counter-transference, you want to be my friend, then you should talk to a colleague about it and consider allowing someone else to provide my care. Similarly, if you’re my friend, I would be concerned if you felt you wished to review my medical treatment (even if I do occasionally show you unexpected lumps or bumps!) Give me advice to see my G.P., or even offer to take me there!

Dear Reader I bit my lip and didn’t correct her. I just shrugged my shoulders and we continued the conversation. I’m not worried, because I know she has lots more training ahead. In our NHS, she is likely to have to ask everybody she works with to help her at some point. But we have all met people who became doctors and are now arrogant and unable to see the perspective of the people they set out to treat, or the other people involved in their care. I sincerely hope she doesn’t turn out to be one.

Life Changing Injury; in which I start using the Kubler-Ross ‘Stages of Grief’ Model.

I’ve finally been able to be assessed. Ten months after the start of symptoms, and nine months after beginning to use my wheelchair, I was finally assessed.

It sounds like someone was negligent, but they weren’t. It made perfect sense, they were previously unable to assess the damage to my joints because of the inflammation and the pain it caused. They could see the functional effects of the joint injury, and treated for that.

But this week, I was assessed. The woman who assessed me (a physiotherapist) was great at putting me at my ease, and at delivering the intervention she had to. I was able to trust her to try to push my limits and to explore the range of motion I now have. I even let her assess the symphasis pubis- the centre of all the pain. The results are in, kids, and it’s not pretty.

She tells me that the symphasis pubis has ‘joined up’, but that one side is an inch elevated higher than the other side. This has a knock on effect on all my other joints- the sacro-illiac joints at the back of my pelvis, both hip joints, and the lumbar joints on the spine all show damage. All the associated muscles are wasted. Pain that I experience now extends throughout my pelvic and lumbar region, through both hips and down both thighs. The pain is of different qualities, from the sharp burning pain at the symphasis pubis, to the dull ache I constantly have in the back, to the muscle fatigue I have after even a little activity, to the pain which travels around the whole area. To further complicate matters, she says I have nerve hypersensitivity. This is when the nerves have been signalling pain for so long they don’t remember to switch off. So even if I didn’t have the injury I could be left with the pain.

I can now walk short distances without crutches, in an upright position, provided my pain is managed appropriately. I think I could walk about five metres. When I am having a bad day, when I have overdone it, when my painkillers haven’t kicked in, I can’t walk without my crutches, and I walk stooped over with a waddling gait. And I reckon again, no more than a few metres. My physio. assessed this, and agrees about the limits to what I can do. To leave the house, she insists I use the wheelchair to get down the steep slope to the road, and for any trips out. She would like me to walk only short distances on even, flat ground without crutches. For times that I am sore, to use crutches, and to take them with me on trips out if I plan to get out of the wheelchair for any time. I’m to avoid carrying weight except, when necessary, my baby. I’m to transport her in the sling on stairs so that I have hands for banister and crutch.

She has told me that I can expect my final level of function after rehabilitation to be somewhere between a full-time wheelchair user and a person who can walk short distances outside without crutches. Where I end up on his scale will be determined by my motivation to engage in rehab. (good), the demands on me due to my role as parent (err, good except between 3pm and 6pm), the number of times I travel by road, jiggling my joints around (okay), the amount of healing (REM) sleep I get (surprised me, this one,) and factors which are not predictable (luck- with which I am not particularly blessed, currently).
I have been doing the exercises I was given months ago. I can now do side knee lifts (about fifteen cm, increased from three), and now do thirty reps where once five was a struggle. I can pull my knee up towards my chest (yeah, right- that’s a way off) using only my hand, I no longer need to use a tea-towel. I am walking between the living room and the kitchen without crutches as much as I can. I do my pelvic floor, and lying pelvic tilts.

She has given me a load more exercises to do, to loosen all the muscles and joints much more. I am going to do them religiously. She also gave me really useful advice about the quality of pain I can work through and the type that means I have to stop and rest. My problem is that my pain threshold is high and I am also quite driven- as a result she is more worried about me pushing to too far than not doing enough.

So since then I’ve been reflecting on what this all means, sometimes by talking, sometimes by being alone and sometimes having a little sob. I know that I have to adjust to all this information and this period of adjustment includes working through the Kubler-Ross ‘Stages of Grief’ Model (Denial-Anger-Bargaining-Grief-Acceptance). I think I’m going round it on almost a daily basis. I may be feeling the gamut of emotions, but realistically I think I’ve been pretty stuck in ‘Denial’ for most of the last five months. And I’m probably not out of it yet. I don’t think any of this has actually sunk in.