Friday, September 9, 2016

Facing Forward: Claire

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Claire
Location: Surrey, UK
Diagnoses: Ehlers Danols hypermobility type, chronic back & leg pain (nerve damage at L5 S1 - historic and recent surgery), bladder probs due to nerve damage
Age at Diagnosis: hypermobility noted by GP aged about 8, but formally diagnosed EDS at aged 44! Ruptured disc and cauda equina syndrome aged 21, chronic pain formally recognized after surgery for second fusion at age 44.

How are you currently treating your condition?
I have had several major back surgeries, including two fusions with titanium screws which failed. I have also taken lyrica, mirtazepine, and oxycontin. The mirtazepine left me constantly hung over, so I only took this for about a year. Last year I had a spinal cord stimulator implanted to help with the pain relief for my nerve pain, and whilst it hasn't gotten rid of the pain, when it is switched on it gives me some control back. My hospital (St. Thomas in London) was clear that I needed to reduce the opiates, which I wanted too, and I have weaned myself off the oxy. I now know that my back problems are directly related to the EDS and having been a nurse! I have always had dislocations and was the bendy kid at school, but in recent times the dislocations have become more frequent and more painful. I don't think it is a coincidence that the joint pain has really increased since stopping the oxy, so I use ibuprofen gel, ibuprofen or naproxwn, and paracetamol.

Heat is my saving grace for both my joints and nerve pain. I have an electric heat cushion and use disposable lumbar ones when the weather is cold (not forgetting my electric blanket in bed!) Whilst I use a stick to walk, as I have limited feeling in one foot, I do try to do some moderate exercise daily to keep everything moving. After I had my second son I took up yoga, and I honestly think this kept me going and nursing for so long. Now I do some gentle pilates, have recently started the Kevin Muldowney programme for EDS maintenance, use my neighbor's treadmill to walk short distances as often as I can, and try tp get out and about. I have a great NHS physio who gives me maintenance support for my joints, and acupuncture when necessary. I also have a brilliant GP who I see every month for all around physical and psychological support. The bladder probs mean that I don't feel when it is full, so whilst I do self catheterisation if I really need to, I try to remember to go to the loo regularly and drink plenty to avoid UTIs.
What are the biggest challenges you have faced since your diagnosis?
When I had my first surgery in 1991, the disc rupture was very obvious on a scan. This time around, scans and initial investigations were showing no reason for the horrendous pain I had, and for so long I doubted myself. I had an epidural to try to help the pain, only to experience a CSF leak. Colleagues kept saying to me "but they must be able to see something Claire" and so then the self doubt started - was I imagining it all? Whilst the redo and extension of the fusion was awful, and has probably left me more disabled, I was pleased that the surgeon confirmed he could see the damage at the nerve root.

Loss of independence in so many things has been a huge deal - from losing my nursing career to relying on others to drive my kids around to needing help getting out of the shower - incredibly frustrating. Add the increasing pain and the side effects of the drugs to this, and I ended up an emotional wreck with depression and anxiety. I have found it difficult trying to make others understand that I'm not going to get better, but have to manage the conditions. I think that now, a few years down the line, the thing that is the biggest challenge is pacing myself.I guess that this is still linked to losing independence and frustration at what I can and can't do! Insomnia is pretty tough too. Over the last couple of months some of my EDS symptoms - dizzy spells, sweating, and fainting - have increased and become quite a challenge.
What are your favorite tips and tricks for managing everyday tasks?
Accept offers of help! Don't be too proud. Also weigh up the pros and cons of using "disability" aids. Whilst using a wheelchair has been a challenge to my strive for independence, it has also increased it as I can enjoy family trips and other things that I wouldn't be able to walk. Pace yourself (ha, ha, ha) and don't feel guilty for needing to rest. Prioritize and, when having a good day, double cook and freeze meals for those bad days. Educate teenagers to help with household tasks, cooking etc. They won't want to and probably won't do it how you would, but it is actually really good for their independence as well as helping out. Learn to say no - I don't have to go out, or do a school run, or take on a new duty.

How do you manage to keep facing forward every day?
Try to remember that there is always someone worse off - having worked for years as a hospice nurse I was reminded of this every day. Good days will be interspersed by bad - those are what Netflix is for! On a bad day when the pain is awful, it isn't always easy to remember these things, but on good days try not to dwell on the bad. Joining social media chronic illness groups has been a great source of support and a way forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I think I would go back to the day I had a medical at a particular London teaching hospital and was told by the matron that "you have a weak back, girl." I didn't know that it and my "double joints" were linked, or that I had a genetic collagen problem, but I think I would tell my 18 year old self to take this advice on board and do as much as possible to take care of myself (maybe be more careful about the type of specialties I trained in and to keep physically in best shape.)

Do you have a blog you would like to share?
My blog is Pain Pals.

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