In the words of Miss Baltimore Crabs “Front step Cha cha cha, Back step Cha cha cha, Side step, Front step, Back And turn!” I reckon life is a little like dancing, you go forwards, backwards, sideways with a few twists and turns thrown in along the way. Not always a negative step to not move forward, gives time for contemplation but there are times when you itch to take those giant leaps forwards and get ahead of the game although I suppose you could say it helps avoid tedium and complacency having these regular challenges thrown at you.
So much can happen in a week yet you when you stop you realise that although your time has been spent dancing furiously you find yourself standing in the same spot as when you began. This week it feels like that yet we’ve been making tweaks and adjustments preparing to move in a forward direction, our journey is more of a swirling loop of twirls, side and back steps with tantalising sensation of a forward motion thrown in here and there.
I mentioned last week that Keisha was in the midst of doing her 4 weeks NCS challenge which she is finding hugely rewarding although it is really pushing and testing her anxiety and social skills. I am immensely proud of how she is coping, she has succeeded in finishing her first two residential weeks which you can read about here
; now she is working with her team “Team Futures” to raise funds for their chosen charity Arena, a local church based charity which provides numerous services for those in need locally they have a child care service called Acorns
, charity shop
(including coffee shop), support group
for those affected by substance abuse, a community garden
and a foodbank
. Keisha and her team had the opportunity to visit this charity during their second residential week and spent a day helping out in the kitchen making up food boxes. They are now focused on planning fundraising events for this week and next to help support the work this great charity is doing for the local community.
My first born child is rising to her challenges and although experiencing some turbulence is hanging on in there and determined to finish what she started ~ this makes me immensely proud and I hope this experience will stay with her and remind her that she is capable of far more than she realises and to not limit herself in what she decides to do with her future.
Tasha, my second born daughter has been physically very up and down recently but I am very happy to say her mood now appears to have stabilised and she seems to be in a better place mentally. I wish the same could be said for her physically. Her ME appears to have improved slightly ~ not wanting to tempt fate but hoping that this is going to be a continuing trend. We still have to rely on the wheelchair but within the home she is able to get dressed every day and come down stairs with us for longer and longer. She has been allocated a fabulous Peer Mentor via a Charity called Children First
who we were referred to via our local CAMHS
team. It is a sad truth that many children with ME become isolated from their peers, you can only say “I can’t” so many times to invitations before they inevitably stop coming which can lead to loneliness and loss of social contact. Especially, when like Tasha, you are not well enough to attend school/college and so have no outside contact with your own age group. She has a couple of older friends who have been wonderful to her and in particular her friend Alex comes over and if she is having a good day utilises her blue badge and takes her round the corner in his car to where there is a Costa, they park directly in front of it which means no walking and they sit outside with a drink, have a chat and then he brings her home again. If this is too much then he brings it with him and they sit outside on the patio instead. The Peer Mentoring service though has been wonderful for Tasha ~ she has been paired with a young woman who has gelled well with her because they have so many common interests. As Tasha isn’t currently well enough to be taken out and about for any activities as it is too exhausting for her her mentor comes to the house once a fortnight and spends the afternoon chatting whilst they both experiment with different artistic mediums, from glass painting, fabric painting to watercolours and acrylics. Tasha looks forward to these afternoons and she gets a lot from them. Physically there are issues, it would seem that she is currently experiencing some underlying inflammatory flare which we have yet to identify the source. This is resulting in gastro upsets, pains in all small joints, flare of psoriasis and contact dermatitis along with a sensation of constant nausea similar to travel sickness and episodes of excessive perspiration. Tests via GP have all come back as normal and so we now have been advised to request a gastroenterology and any other possibly relevant referrals via the Consultant review on the 15th August to seek out the cause and then with some luck treating it effectively. I am confident if we can cure this inflammatory response we can then move forward and build on rehabilitation and pacing with the ME.
Tara, my youngest, has also been suffering additional issues other than her ME. She has a chronic bowel complaint which we think has now resulted in malabsorption of nutrients causing malnutrition. Our very thorough and kind GP has sent us for every test she is able to send for (our second visit to the blood clinic was Monday this week for the final round of tests). She has pre-warned us that she expects them all to come back as normal because she feels that the physical manifestations we are seeing are due to the body not receiving the essential nutrition it requires. By having these tests already completed though means that when we visit the Consultant on the 15th we can say we are ready to move forward to a referral with the gastroenterology team to find out what is not absorbing and why so that we can treat it and also follow up that with dietician referral. This means that although her ME appears to be stable right now her physical health is very poor as she is extremely fatigued, nauseous and in pain. The weight loss has levelled off for the moment and we hope we can prevent any further decline in weight but it’s a hard job and a struggle for her to eat to ensure that she has enough calories.
It feels like right now we are treading water with my youngest two daughters yet they have incredible positivity and strength. They don’t complain, they get up, come down and make us laugh ~ they make the best of life and ensure those around them do to. They aren’t invincible though and have moments of despair when the pain gets them down and being cheerful isn’t easy but these episodes are short lived, a cuddle and knowledge that they are understood seems to help them to lift their chins back up and carry on. My eldest daughter struggles to see them fight so hard and feel so ill and it is hard for her to have time with her siblings as by the time she comes home they are too tired to interact with her much and inevitably go to bed. She has her own struggles which are different from her sisters but equally as difficult to negotiate, yet she does, she doesn’t give up either. I have no idea where they get this fighting spirit, determination and unwavering spirit from but I am grateful for it. They have abnormal normal lives which have forged them into unique creative souls with a empathy for others and a vision of life different from their peers ~ perhaps there is some as yet unseen path for them for which this life and struggles is preparing them for.