My Story

Audio recording here. 

Home

I live in a small terrace house in England with my partner and my miniature Schnauzer. My activities are limited at the moment and mostly involve being a very part time researcher (from home), ME advocacy with ME Action Network, watching Netflix, going online and using relaxation resources.

In the summer I enjoy sitting outside in my garden. On good days (about once a month) I can go with my dog to the park on a wheelchair ‘walk’, or go out for a coffee. I find the sensory stimulation of going out is often too much, so a powerchair isn’t enough to make the outside world fully accessible to me.

2017 edit: for the past year I’ve been getting involved in ME advocacy/activism since my terrible experience of lack of appropriate healthcare when I was paralysed (see this post). This involves stopGET ( www.stopGET.org ).

Surprisingly, I’ve just started very part-time work on a research project into chronic illness with Catherine Hale and the Centre for Welfare Reform. This is very encouraging personally. I’m working annualised hours from home. I’m also very interested in the topic of the research. I’ll explain more as it goes along.

Health

There are probably several different narratives I could tell about my history with ME. The simplest explanation is that I developed it as a repercussion of glandular fever when I was 19 in 1998. It took a few years to get a diagnosis, partly because my sister also had ME but my experience was quite different from hers. I had a definite relapsing, remitting style pattern earlier on, with the better periods being fairly normal. Over time I acquired more symptoms and it’s much harder to get over setbacks, the repercussions of exceeding my energy limitations became longer lasting.

I used to be able to maintain part-time work through general pacing, although I usually felt ill. For a period of time a decade ago I was 95% recovered and working full time hours, possibly full ME remission and mild POTS. Over a few years I had downward steps following viruses. Then in 2012 I had a sudden, severe relapse and I haven’t bounced back from this.

I have been mostly housebound/bedbound and my legs turn to concrete when I try to walk more than a few metres. I seem to make reasonable improvements and then setbacks undo it. Since 2012 I have been concentrating on learning more about relaxation techniques, alternative approaches to CFS/ME and current research developments. I was finding it difficult to read (as if I’ve developed dyslexia), which made it hard to access information. I hope I can help you by providing resources all in one place. My difficulty finding accessible, affordable tips was the motivation to start this blog.

I am no ME guru, as I am still virtually housebound myself. I hope that one day this page will contain my recovery story.

2017 edit: I’m finding that my cognitive ability has improved but my problems walking are increasing and can be very disabling even within the house (such as getting stuck upstairs for a month recently).

POTS Diagnosis

Update: in December 2014 I was also diagnosed with PoTS. This diagnostic journey is chronicled here on the blog. It also confuses which symptoms and treatments are good for which condition, which maybe worth bearing in mind. I wrote a post comparing ME and PoTS and a post encouraging everyone with ME to check for POTS.

Experience

I have other experiences which are relevant to the creation of this site.

  • I am a psychology graduate and have written a dissertation on health psychology
  • I am a qualified to teach adults and have teaching experience
  • I have worked for disability charities and understand the Social Model of Disability and accessibility requirements

I am not a chartered psychologist though, see here.

If you would like to share other free/cheap resources or tell me your story, please write to emailtipsforme@gmail.com

Jenny.

 

31 thoughts on “My Story”

  2. Jenny, I got to your website from the OHC Community site where you posted. I really appreciate that you’re trying to consolidate FREE resources; I already have downloaded a couple; it’s nice to have a variety of meditation/relaxation resources. I noticed a similarity in our stories: I was also diagnosed in 1998, and I also suffered a severe relapse in 2012, with a continued downspiral to now, where I am wheelchair bound for the past 4 months. Perhaps we can provide mutual support on some level during out journeys to recovery. In any case, I’m so happy you’re offering this website. Take care, feel good.

    Chaya Dina

    Like

    Reply

    • Thanks for the encouraging feedback.

      Chaya, that’s a weird coincidence. Was there a definite trigger for your relapse? Mine seemed to be a perfect storm of various different stressors (but no one big thing) and perhaps a bit of complacency that I could manage pacing well. I’m now trying to tell myself that I did well to manage the condition for so long, rather than beating myself up for not avoiding the relapse…

      Like

      Reply

  4. On your site from OHC. Great idea thank you. My major relapse was 2003 when I was bed bound, then house bound etc. since then I’ve had an electric wheelchair supplied by social services which means I can move around the house and garden independently. I also can drive it onto community transport to go out independently when able. these days most of the time I’m also well enough to use mobility scooter to go out. Just wondered if you have electric wheel chair. it’s my life as I live alone!

    Like

    Reply

    • Sarah, I’m thinking about getting a scooter or electric wheelchair now that I’m improving a bit. Any advice on makes and models or best value websites? I’d want it to fold up in the boot of a car and be able to use it to walk my dog.

      Like

      Reply

  5. I’ve got a Go Go Elite to dismantle and put in boot of car, but I’ve just seen a new one advertised that folds up much more easily and the battery is light to lift. It’s called Minimo by TGA. My scooter needs a strong person to dismantle it and put in car. What I did when buying scooter was phoned a local mobility shop and they brought scooters to my house for me to try. You could look ideas up online first? They were really helpful from the shop and it was good to be able to try out without having to try and get to shop! Remember you get the vAT off but they will tell you that
    Good luck! Xx

    Like

    Reply

  6. Another thought – the scooters that will go into a car have small wheels which are fine on concrete paths and short dry grass, but not on wet grass or stoney paths.

    Like

    Reply

  7. Royal London Hospital for Integrated Medicine is an NHS resource that takes GP referrals nationwide – it offers a holistic approach to ME, CFS,, fibromyalgia etc including homoeopathy, acupuncture, physio, psychotherapeutic services and much more. While their preferred model is a series of visits, they will work with patients who find it impossible too attend more than once. Part of UCH hospital family in London

    Like

    Reply

  8. I have an article which was published a few years ago in ME Association mag. It’s called “Capturing the Essence.” and fits with your theme of making the best out of life despite the ME. I don’t do blogging, so I’m going to copy and paste it here if I can!

    Capturing the essence
    How to make the most of life when faced with great restrictions due to severe ME

    I have been living with severe ME for several years. The restrictions of ME have meant that my level of activity has ranged from lying on the bed all day, unable to stand, only just able to sit up in bed and chat for a few minutes – to moving around the house and garden in an electric wheelchair, riding a mobility scooter for 20 minutes, chatting for an hour and a half.

    Before the illness I led a very active life – as is the case with most ME sufferers. I was a full- time infant teacher and I played the piano at our school. I acted in amateur dramatics and played the flute in a concert band. I swam, walked, went on foreign holidays, regularly played Bridge and had a full social life.

    What a change from all that! I have had to come to terms with living a very different sort of life now. Most of my emotional stress comes from yearning to do the things that I used to do and feeling frustrated with the limitations that now dictate my life. When I am able to truly “be in the moment” appreciating what I have right now, however limited, then I am at my happiest. Obviously this is difficult to sustain. One of the most difficult traits of this illness is the way it allows you to begin to get your life back, and then cruelly snatches it away again.

    I’m continually trying to find ways to create the best quality of life I can, whatever stage the illness is at – to really savour the few minutes activity between rests, to make the most of limited energy and concentration by doing something I really enjoy. That was how I developed the idea of “capturing the essence.” Put simply, it’s about identifying the enjoyable essence of a favourite activity and trying and to find a way to give ourselves that experience – despite the mental and physical limitations.

    With some activities it’s possible to do the same activity as before, but for a shorter time. I have often had one course in a restaurant and taken the dessert home to have later, after resting! I have also seen several first halves of plays, and sometimes the second half two days later – and at the matinee, as I cannot be out late in the evening. Our local theatre now gives me complimentary tickets for the second performance. Maybe the day will come when special two-part ME tickets are available!

    Some activities, however, seem impossible to do anymore. This is where “capturing the essence” works best. Here are some ideas and ways to re-create the essence of the experience depending on the severity of the illness at the time.

    • Activity – walking by the sea – the essence is being by the sea, moving, fresh air.
    • Lie on the bed with the window open listening to sea sounds on a CD.
    • On the bed look at pictures of beautiful seaside views.
    • Watch a TV programme like “Coast” and imagine being there.
    • Sit by the sea in a wheelchair.
    • Get pushed along the sea front in a wheelchair.
    • Ride a mobility scooter independently by the sea.

    • Activity – being an infant teacher – the essence is being with children and helping them to learn.
    • Have friends’ children to visit and lie on the bed reading stories to them, sharing books, hearing them read, singing. Do writing, drawing, cutting and sticking activities with them on the bed. I’ve found that children love being on the bed with me!
    • Have a sand and water tray in the garden for friends’ children.
    • Teach piano for a few minutes to a friend’s child.
    • Go into the school where I used to work for regular short visits to read to the class or listen to children read.

    • Activity – amateur dramatics – the essence is performing, learning a script, being part of a team, working on something creative with others.
    • Learn and recite poetry with family and friends
    • Read a story to a friend
    • Record a CD or video reciting poetry
    • Play scrabble, Pictionary, charades etc with others

    • Activity – playing music in a group or orchestra – the essence is creating music with others and performing
    • Play duets at home with a friend
    • Perform the duets at home for family and friends, even if only for 5 minutes!

    • Activity – swimming in the sea – the essence is the sensation of floating in water, smelling the salt water on my skin, being in the sea
    • Paddle in the sea from the wheelchair – not easy, but it is possible!
    • Paddle in a bowl of seawater on the prom or even in the garden!
    • Splash seawater over my body
    • Lie in the bath and imagine………
    • Use a hoist to get into a swimming pool and use floats if your muscles cannot keep you afloat

    • Activity – gardening – the essence is being outside, feeling the soil, making things grow
    • Have raised beds that you can reach
    • Use pots raised to suitable height
    • Plant seeds and bulbs in small pots that are manageable to lift

    These activities may not be your favourite hobbies. However, I hope that my idea of “capturing the essence” may encourage you to be creative and to find ways to adapt your chosen activities in order to give yourself the best quality of life possible – no matter how the ME is behaving!

    Concentrate on what you CAN DO NOW. Don’t compare yourself to when you were well. Focus on your quality of life NOW, whilst keeping a balance of rest and activity. Prioritise, and get help with the necessary personal and household tasks, so that all of your energy doesn’t go on merely surviving. PACE yourself, PRAISE yourself, be POSITIVE, PATIENT and PERSEVERE!

    Good luck!

    Like

    Reply

  9. Sarah, I like this essence idea. I’ll have a think about that. I find I can’visit’ favourite places during hypnosis. It helps to remember details eg HopeCove, Lake District Japan. I record my own hypnotherapy scripts. At some point I’ll blog about this.

    Like

    Reply

  11. Pingback: Severe Uncertainty: planning and ME | Tips for ME

  12. Hi Jenny and Chaya, just found the blog and was surprised to find that we have so much in common, which is very comforting considering our circumstances 🙂
    I suffered with tiredness,depression and unresolved stomach problems from around the time I was taking my GSE’s and gradually became less able to function on a normal basis. I went on to develop Crohn’s disease in my twenties and was eventually diagosed with CFS in my forties, although I have had all the symptoms since I was about 12 years old, maybe when the old hormones first kicked in ? I also suffer with an underactive thyroid.
    I’m not wheel chair or bed bound but I am housebound most of the time, although I do make the effort once a week to get out for a coffee with my hubby. He does the shopping as I can’t manage it. All the things you have talked about ring true for me too.It’s great to hear of your experiences and I appreciate the energy you must use up just thinking and typing.
    I’m still exploring your site and look forward to future posts.

    Liked by 2 people

    Reply

  14. I’m so excited! I thought I was all alone with the multi symptomatic ordeal I’ve been having since birth… with several years of perfect health in between, only to find myself stricken with such oddities as Eastern Equine Encephalitis, St Louis Encephalitis, and one other form that I can’t recall the name of..
    I then had a stroke at 40, followed by seizure disorder that didn’t respond to ANY medication. Since being forced into early retirement from special education teaching, and psychometric testing, I have gone through the spectrum of depression, from being robbed of what I believed to be my life’s calling. The story would be funny if it were not so frustrating. I’m dealing with a liver infection as of yesterday’s​test results…and have been fighting the battle between Drs for years, who insist I have a mental illness instead of helping me with the symptoms that arose after being robbed of my life’s passion. I’m mimicking what I seem to think are signs of chronic fatigue, rheumatoid arthritis, digestive problems… just to name a few.
    I’ve actually been diagnosed with the RA, and other things…COPD, anxiety, IBS, and memory loss due to the bleed out from the stroke.
    I’m not going to keep you, I am just so excited to have found your site.
    Thank you,
    Tommie Kendrick~

    Liked by 1 person

    Reply

    • Hi Tommie. Hope your liver infection clears up easily. I think for people who have lots of health issues there’s usually a reason somewhere why they’re connected. I used to think people were super unlucky or over diagnosed. On their Twitter profile you see #MEcfs #POTS #EDS etc but when you learn a bit more you realise that these things are often comorbid and have overlapping issues. Of course there’s also no limit to how many different things can go wrong;) which is called Hickam’s Dictum (opposite of Occam’s Razor)

      Like

      Reply

What do you think?