It’s been a while since I was last in touch, life is a strange creature, it’s direction never easily predicted or controlled. I am writing this with the help of my assistant Siri (more about him later) to try and explain why I am being distant.
Is currently on hold.
I am predominantly housebound, able to do very little, declining week on week. I am scared, I don’t like losing control of my body ~ not knowing at which point I will stabilize. When I was given my diagnosis of ME I was hugely relieved to finally know what was wrong with me. I was also terrified because I have nursed my two youngest daughters through incredibly poorly episodes where they were bed-bound, in severe pain along with numerous very unpleasant additional symptoms. They are still poorly but not as severely as before, which also on the flip side, gives me hope.
Initially I was able to do much more than I am now, I think partially the reason for my decline is my own fault, trying to push on and not give in to the horrendous fatigue and pain. However as time has moved forward my body is putting its petulant foot down and simply preventing me from doing what I did before. My ankles, knees, hips, back, neck and wrists give me constant pain, like a nagging toothache all over my body which won’t go away despite all my attempts to get rid of it. The pain combined with weakness mean I am unable to walk any distance, when I do, I can only manage with the assistance of ankle/knee and wrist supports along with stick or crutches ~ I could use our wheelchair but have no-one available to push me! My ankles are constantly swollen with puffy fluid filled pockets, my energy levels are rock bottom, getting up and downstairs makes me feel like I’ve run a marathon. It sucks!
I am learning to adapt to my condition, which is thankfully now being recognized as a disability which has enabled me to obtain a Blue Badge and thankfully it has been recognized in the Equality Act 2010. The following are quotes from this Act relating to ME…
“Mental impairment covers a wide range of conditions, such as learning difficulties, but only applies to a mental illness if it is ‘clinically well-recognised’ by a respected body of medical opinion. Cases already heard have established that Myalgic Encephalopathy (ME) can be classed as a disabling condition.”
“Impairments with fluctuating or recurring effects such as rheumatoid arthritis, ME/chronic fatigue syndrome (CFS), fibromyalgia, depression and epilepsy”
Also, 2015 marks a momentous moment in the recognition of the illness being something real, physical and absolutely not psychologically based at all. I quote the following important phrases..
““The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” They suggested that it be given a new name: systemic exertion intolerance disease.”
It goes on to say “People with ME/CFS, the report noted, are more “functionally impaired” than those with Type 2 diabetes, multiple sclerosis, and congestive heart failure—diseases that we know to be very grave indeed.”
If you are interested in reading the whole article just click on the link here.
Anyhow, I digress, my ways to adapt are simply cutting back on all activity. How do I do that? To try and explain how my life is at the moment I have broken it down a little in the following…
- Shopping: this is hugely draining, just pushing an empty trolley is difficult, let alone a full one, going through checkout, packing into bags, transporting bags to car, putting in car, driving home, unpacking bags from car to kitchen then unpacking bags into cupboards = energy melt down and pain soaring. So instead I now create a shopping list online at my chosen supermarket, which I add to, day by day until ready to request delivery at which point I checkout and select delivery at a time when I know I will have someone home to help me receive and unpack it.
- Meals: Preparing, cooking and cleaning up after meals is hugely draining, so now I plain quick easy menus which can be prepared in advance so I can chunk activity into manageable amounts then enlist help with clearing and sometime the cooking too. Realizing that sometimes eating prepared frozen or ready to eat meals does not class me as a failure as a mum/wife, just a realistic alternative on days when preparing food is too much.
- Dressing: you would be amazed at how much energy is used up simply by washing and dressing. I shower if I can, there is the option of shower stool should I need it. If I can’t shower then dry shampoo, wet wipes and clean teeth with electric toothbrush. Dressing is usually uniform of comfy fit cotton leggings with loose t-shirt and hoodie. Tight clothing can become painful against the skin and so the leggings are as near to pj’s as you can get ~ although some days just the washing is enough and I simply stay in my pj’s; although do put some clean knickers on ~ I still have standards!
- Reading/Writing: I am currently unable to read due to cognitive issues, it’s hugely frustrating to say the least as I have books I am desperate to dig into and have yet to organize obtaining the audio books. Writing too is a struggle, my wrists are just too weak and sore to hand-write, when I do the writing is appalling, so I type. Mostly though I turn to my P.A., Siri, who is an absolute gem, I couldn’t do without him. Obviously I hired the male Siri for this job because I feel he will be less judgmental when I roll up with my uncombed, unwashed hair, wearing food splattered pj’s, covered in dog hairs and not wearing any make~up. Plus he is wonderfully polite and full of complements, which lead me to having conversations with him about all kinds of things, he has really quite the sense of humour and is excellent at taking dictation and reading back to me whatever I need to read at any given time, he never sleeps, is never grumpy and so always available. He remembers my appointments and times my cooking for me so I don’t explode boiling eggs or burn things (as I have a tendency to wander off and forget).
- Going out: this is a difficult one, I have to decide what is necessary and what isn’t. I drive the girls sometimes to appointments or other activities when The Dave can’t do it for me. I drive a small automatic car, changing gears is too much for my chocolate wrists. I also have a padded fluffy steering wheel cover which makes holding and gripping it easier. When I go out I plan where to park and use my blue badge to ensure minimal walking is necessary and always carry my stick with me.
- Socializing: this is immensely draining, interacting with others and putting on a brave face, trying to act and behave as expected is unbelievably tiring. So socializing is usually something that is relegated to “one day” with the odd exception. On those occasions I need to have contingency plans, somewhere to rest, a way of politely excusing myself and leaving, if any distance booking a hotel room to escape to and rest. Those who know me understand, they accept the last minute cancellations or changes to plans. I miss this part of my life but realistically right now this is not really possible for me to embark upon.
- Depression: this goes hand in hand with the illness for many sufferers because after the diagnosis comes the reality hit, the realization of how different your life has become and the losses it brings. Pleasure comes from the simple successes, the good days, the pain free moments, the laughter with those who understand when you knock things over or lose the ability to maintain coherent conversation. Knowing that this is a factor and addressing it, talking to people helps. Not bottling it up but sharing, it not only helps me but those around me understand too.
- Asking for help: simply accepting and asking for help, pushing down my pride and letting others in. Seeking help from the GP, family and friends. This is not a weakness ~ don’t let pride stop you accepting help when offered.
The acceptance of this illness is still something I have yet to do, I feel guilty for what I can’t do, for others having to compensate for me.I am a control freak who has no control, and having to accept defeat sometimes is hard.
On the 11th June I was supposed to be renewing my wedding vows with The Dave. We had planned the ceremony, involving the girls along with our close friends and family ~ followed by a party with music, laughter, photos, buffet and drinks afterwards. The Dave vocalized what I had been thinking but dreading saying out loud ~ he has observed my declining health over the past few weeks and remembered back to the early years with the girls. They too initially declined before reaching the point when they stabilized, plateaued then very slowly improved bit by bit, still not well but in a better place than before. Quite simply I am too poorly for this celebration. I cried and become very low in mood accepting this, but know it’s right. I am frightened because I fear my decline has not reached the point of stabilizing just yet and am fearful of how far it will go.
So the event is cancelled, instead we hope to have the celebrant come to our house and perform the ceremony with just myself, The Dave, the girls and the Hairy Trio. It will be low key, low energy but special, intimate and hold deep meaning for us both. The girls will decorate our dining room (after pushing the table aside) with flowers and fairy lights. Cameras on tripods on either side to film the proceedings as a memento. Tara has offered to then edit the film so we can share it with our friends and family in a virtual celebration ~ and who knows perhaps one day we can have a belated party to celebrate in person too.
I have to give a shout out to The Great Northern in Mickleover, who have been fabulously understanding when we cancelled the venue and rooms we had booked. I would highly recommend them if you are local for somewhere for pub food, ambiance, party venue (The Northern Suite) or boutique rooms for overnight stay.
I know I am lucky, I have a husband who “gets” this illness and who supports me with compassion, love and understanding. My girls who understand as they know first hand what is happening to me and my body. Living with people who accept me as I am and don’t expect anything from me other than what I can give is a blessing. I wish I didn’t feel so guilty about not being able to be a full on hands on wife and mum, but they know I do all I can for them as and when I can.
Thankfully I have social media to maintain contact with the outside world but find even that is massively draining. So am there but lurking, not really interacting, apart from the odd “share” of something amusing or important to me. I ask you not to be offended by my lack of contact, when I am well enough I will make up for that, although have no idea when that will be.
I have been to my GP who has taken vials of blood for analysis looking for anything that may be exacerbating my symptoms. I also take codeine and have been started on slowly increasing dosages of amitriptyline for pain, I know it’s an antidepressant but is very commonly used as a pain killer for ME sufferers. “The tricyclic antidepressants, such as amitriptyline, are the “gold standard” for neuropathic pain as they are the most effective and best-known drugs for this condition. They can also be useful for chronic nociceptive pain, especially if there is a neuropathic component to it. They appear to work in the nervous system by reducing the nerve cell’s ability to re-absorb chemicals such as serotonin and noradrenaline. These chemicals are called neural transmitters. If they are not reabsorbed they accumulate outside the nerve cell and the result is suppression of pain messages in the spinal cord.”
Thank you to you all for your ongoing concern, support and continued friendship. It’s not easy being a friend of mine, I am forgetful, cognitively impaired so conversation my just evaporate as I lose momentum and words, I have to cancel seeing you ~ even in my own home which can sometimes simply be too draining for me. So I apologize for my absence and lack of contact, I love you all dearly and as Arnie always says…
“I’ll be back!”