Dear Work, Thank You For Being There

I had my meeting with work today which I had been fretting about all week. I decided to give myself some back up by writing everything down for both my benefit and my boss (eds is a lot to take in!). In my last post I said that if it went well, I’d post my letter. It not only helped, but I left wondering why I was ever so worried.

Please feel free to use this (I’ve edited out some of the more personal bits, but in essence, it’s all there). It’s less of a letter & more of a statement. I’m thinking of adding this to my folder with the photos of the weird crap my joints do.

I have a genetic condition known as Ehlers Danlos Syndrome. Ehlers-Danlos syndrome is a group of inherited disorders that affects the connective tissues, joints, skin and walls of blood vessels. It’s often referred to as EDS and there are multiple types, each with a variety of different symptoms. This is a lifelong diagnosis and there is no known cure. More information from the NHS can be found here.

I have yet to be given a specific sub-type, although my referral points to HEDS, which is EDS Hypermobility type.

Just as with the Autistic Spectrum, the EDS spectrum means that not all individuals experience the same symptoms and because of this and its perceived rarity, it is difficult to diagnose. In fact, whilst I have shown a number of symptoms since early childhood, it took a recent deterioration and detective work by my GP to join the dots of a number of issues.

What Makes My EDS:

Overly Flexible Joints (hypermobility): I currently score 8/9 on the Beighton Scale for hypermobility. This is a diagnostic tool for joint hypermobility (I can no longer touch the ground fully now 3 disks have degenerated in my lower back).

The downside of this is that each time a joint is stretched too far, the tendons, ligaments and muscles remain overly stretched. A good analogy is chewing gum which stretches, but remains stretched until it eventually snaps.

In the same way that pulling a muscle or ligament or tendon hurts in anyone else, it also hurts for someone with EDS. The primary effect of EDS is joint pain. This may happen at random or as the result of an injury. My joints have the ability to fully dislocate or sublax (partially pop out). And whilst in most cases, I am able to relocate these, sometimes I require medical assistance. During the course of the day, it is highly likely that my SI joint (a usually static joint at the back of the pelvis) will ‘pop out’, my right hip & both shoulders regularly sublax, my knees will ‘slip’ backwards when walking up stairs, and my elbows sublax when carrying heavy objects with a straight arm. As identified above, I also have a number of degenerated discs in my spine that regularly cause pain. My fingers and toes are also affected, but are more likely to just be painful than dislocate. I often have tension headaches.

In addition to being unusually flexible, I also bruise very easily. Whilst this looks worrying, it doesn’t bother me and I often have no idea how they appeared. When combined with another EDS trait of being clumsy (hypermobile hands often drop things), this means my shins and knees often look like I play rugby (I don’t). This issue is also seen in the mild flexibility of my skin which is not as stretchy as some with EDS, but nonetheless tears easily and takes longer than average to heal.

The final, and often most intrusive symptom is fatigue. Because each of these daily injuries hurt, and I use my muscles to stabilize my joints (both consciously and unconsciously), I am often particularly tired. I have described how this can be managed below.

What I Do To Manage My EDS

Since my early 20s I have undertaken Pilates style exercises which allow my muscle groups to stabilize many of my joints. I have been given a number of resistance bands from my physiotherapist to enable me to maintain specific stabilizing muscle groups.

I avoid group sport or any form of contact sport as this would put me at risk of injury.

At work I use a wheeled bag to transport items such as my laptop. 

I make use of crutches to support my pelvis, spine, knee & hip joints. Unfortunately, the use of these puts pressure on my wrists and shoulders so prolonged use leads to further pain. More recently, I have made use of a self-propelled manual wheelchair at home to allow my joints to rest and manage fatigue which builds up during the week. Whilst this provides me with a significant improvement in fatigue & pain, I am keen not to use this all the time as this would affect muscle tone. For this reason, the use of splints and crutches is a viable option for shorter distances.

I have been prescribed pain medication for some considerable time prior to my EDS diagnosis to manage spinal & joint pain. My GP and I have managed this for a number of years and I currently take diazepam sporadically as a muscle relaxant and dihydrocodeine for pain relief on a daily basis. An aspect of EDS is that many forms of pain relief are ineffective and local anesthetics have little effect.   

I am registered with XXXXXX Hospital Musculoskeletal Department. This is in combination with regular physiotherapy appointments which, where possible are scheduled with an understanding of my teaching commitments.

What Others Do To Help Me Manage my EDS

At home, I have the support of my husband who discreetly assists with some mobility tasks and ensures tasks such as lifting objects are not undertaken by me. These tasks are dependant on pain levels and may vary from assisting me with lifting my work bag to putting on shoes.

What You Could Do To Help Me Manage my Symptoms

My first concern is that I wish to remain a fully participating member of staff and wish to make it clear that I have no intention of reducing my workload, burdening my colleagues, nor wish to take time off. To date, the only sickness taken in relation to this was post operative last academic year following spinal surgery.

I am currently experiencing an increase in pain and subluxations due to standing / walking for long periods of time during the day, this in turn is leading to increased fatigue which builds up to becoming unwell at the weekends as I ‘put on a brave face’ during the week. I am currently finding negotiation of stairs a particular issue. I believe that this could be managed more effectively if I could make partial use of my wheelchair during the day, however this poses an access problem within school. In order to get from the lift to my office there are several steps which would require a ramp.  

The provision of Google Classroom and LANSchool already make a significant positive impact on my work as I am able to engage and feedback directly with the work being produced at any time by students.

As much of my pain cannot be managed with drugs, I would like to be allowed to bring in a microwave to the XXXXXXXX department in order that I can make use of heatpads which are particularly helpful. Whilst I am happy to provide this, the school would need to be willing to PAT test this for use.

Not all classrooms have an ergonomic chair, and sitting for any period of time on plastic chairs is particularly uncomfortable. Whilst we have moved one of these into room XXXX which is my main teaching room, this is quite often ‘borrowed’.

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