It’s ME Day again. Even after now 10 years, yes a decade of being ill I’m still learning about living daily with ME. Yesterday was a day when I had to sleep literally for 90% of the day. It was not something I could fight as it was totally overwhelming. I cannot find a similarity to anything I experienced pre-ME, which is annoying as it seems to help understanding when you can offer something to compare.

An acquaintance asked if it was a bit like after an operation when you have to sleep and rest and just cannot chat easily and hope visitors leave so you can just rest. Yes there are some similarities to this.

I have noticed that I have recently lost that desire to do stuff. I used to crave long walks, wild nights out socialising, travel, shopping, days out at adventure parks, museums visits etc. I still occasionally have desire but have lost the must do drive. This is good in that I’m less sad, have less disappointment or bitterness. Smaller activities mean more such as just being in the hot tub, lunch out on a sunny day with family or friend. I appreciate more of my immediate surroundings, our home and garden, a trip to the river meadows, the occasional outing to a National Trust property, just being.

Acceptance is good. This does not mean giving in or not fighting but living with life as it is. As with grief there are levels and cycles of acceptance which I suddenly notice that I may have just been through a new cycle over a week or a month. I believe the loss of needing / wanting is a new level of acceptance.

I maintain hope of being well. ME research has increased helped by sharing information internationally, hurray for the Internet. Until a couple of years ago it was much more of a fight from a few. Examples of instances that have helped include the ME sick child of a top Stanford person, recognition that ME is real, research finding unique potential bio-markers and a growth in awareness has helped gain financial input.

There is also hope that Rituxamib maybe a near cure. Stage three clinical trials are underway in Norway using Rixtuamib on people with ME. Reports are of 65% success which is a fab result apparently for a clinical trial. Doctors there found this following 2 female lymphoma patients treated with rituxamib for their cancer reported it had also cured their ME. Their doctors are now leading the way for ME.

University College London are jointly working with Norway and carrying out B cell research in liaison with Norway which is needed to help identify which ME patients may respond to rituxamib. As the clinical trial is ongoing there is a 2 year wait for results. Even if successful it maybe years before the British layers of approval clear rituxamib for UK ME patients, let alone whether there is money.

But there is now hope on the horizon. It’s just a bit scary that I maybe heading towards being 60 when rituxamib maybe launched (or not) in the UK.

Sadly I’m also aware of how many youngsters are living with and becoming ill with ME. There are concerns about the anti cancer vaccine where some young girls have become ill with ME immediately, literally seconds after having the vaccine. I’m lucky to have had 40 years of normal living, whereas these youngster are just starting out.

I ask if you hear of somebody – possibly a teenager – who is continuously ill with symptoms of a flu like illness then urge them to rest, rest and have even more rest. Tell them to look at Phoenix Rising or Foggy Friends websites. Ignore websites offering amazing ME cures for money. Pushing yourself physically, mentally or emotionally makes ME worse, which is totally against our normal urge to fight. It seems young people have a higher chance of near recovery if they don’t fight. Strange but true.

So as I start a new decade in living as well as I can with ME there are many positives. I don’t partake in the commuter pressure and queues. I’m on occasion a lady that lunches. I eat highly nutritious food in small amounts and have learnt loads about how important it is to truly “fuel” my body rather than just eating whatever I like. A new hobby is cooking. I also have time to learn from research. I’ve learnt who are truly supportive family and friends. My mobility awareness has grown with an appreciation of steps, smooth surfaces (a 10 minute ride over cobbles hurts my body and can cause a relapse (how mad is that))), no mud as the power-chair gets stuck, truly accessible places with ramps, lifts and alternatives to steps.

I love my power-chair and my Surge vehicle with its ramp to transport the chair. I think of others who are totally bed bound in dark rooms 24 / 7 unable to tolerate any noise or light, drip fed ongoing and for years. If you know someone with ME, make contact with a text or email. Let them know you care. Ask how long you can visit or talk for. Let them know you are there for them whether today, next week or over the years. Appreciate your health and nutritiously “fuel” your body but just with what it needs.

Wishing everyone health and happiness on ME day.

Sally