However, I am pleased to say that she is resting well – her lovely boyfriend Sam has come over to visit her for a couple of hours today and is just lying beside her, chatting quietly, reassuring her and keeping her company while she rests. It’s friends/boyfriends like this that can make such a difference to someone so chronically ill, to be understood and to still be unconditionally loved means so much. We tell each other that although it is beyond our capability to be able to fix the girls problems – one thing is for certain and that is they will never have to face them alone – we will always be there for them.
This past week has been busy and emotional for all of us – saying that we have still managed to find comfort, laughter and light from each other even when the dark clouds of adversity were pressing down upon us.
The Dave, Keisha, Tasha and Tara are all my heroes – they continue to fight for and support each other – they are just ordinary people who are showing the world that they will not allow life to beat them down – they persevere through stormy times and endure the challenges life throws at them remorselessly. I am grateful to them for allowing me to share our experiences with you all and hopefully help you to realise that you are not alone – so many are suffering the same challenges in life – and in my book – that makes you all heroes!
My beautiful Tasha has been suffering sorely this week, she spends almost all her time in bed trying desperately to build her reserves to enable her to be strong enough to participate in any activity with us. Her goal this week is to be well enough to join us on Tuesday for Tara’s birthday celebration meal at a fusion restaurant. We tried to take a trip out in the wheelchair during the past week, just to nip out and pick up a few bits from town. We drove there, parked and managed to make getting down to a shop we wanted to visit on the ground floor before her entire body started to shake and she was overcome by panic, anxiety and exhaustion from the overload of stimulus around her. We immediately returned up to the car park and drove home. Then due to exhaustion and post exertional malaise – she was unable to have her home tuition later in the week. She has also suffered almost continually from hallucinations in her peripheral vision along with the odd auditory and olfactory hallucinations. This is exceptionally frightening for her, we have been reassured by her doctor that this is due to her body being so exhausted that it isn’t processing information properly and the hallucinations are the bi-product of that. We have been reliably reassured that with strict bed rest and pacing these should reduce and then peter out as she regains some strength.
Keisha saw her wonderfully understanding and supportive psychiatrist last week too – we are trying different medication now to combat her anxiety and depression as her previous one wasn’t holding her at all, although it will take a few weeks for her body to adjust to the change. This means for the next couple of weeks she may feel a little strange and “wobbly” and then for a further two weeks after that if we then step up the dosage. BUT we are hopeful that this change will be more effective in helping her deal with daily life and manage to cope more easily. We then had a meeting with her College the following day to discuss how they could further help and support the work the psychiatrist is doing. I must say – both myself and The Dave were hugely impressed by her College – they met us in a quiet room and Keisha was able to join us – which was recognised by the Head (as meetings such as these are difficult for her). The entire meeting was friendly and informal, Keisha was addressed throughout and involved in all decision making. She has been invited to join mindfulness sessions once a month, run by trained psychologist, teaching specific breathing techniques, meditation etc. Also, to be given a “Get Out” card to show to tutors if she feels an episode coming on and a room to retreat to, a place to have a drink and calm down in peace. She is also being offered 1 to 1 sessions within the College to support her and help her – which is beyond what we expected and are very impressed. To top it all off, she is also being provided with exam support – individual room and invigilator for exams with extra time – incredible support and also understanding from all the staff we have met and are involved in her education.
Tara has done well this week – she has managed her tuition and impressed her tutor with her ability – especially since she has been out of education for three and a half years! She is struggling to pace, suffering terribly from back pain and fatigue but has rested throughout the week in order to enjoy a sleepover with two of her closest friends. I dropped them off in town where they went to the cinema and had a costa coffee before I picked them up again. Then enjoyed junk food of pizza, garlic dough balls and birthday cake number one (big brownie) AND scones with jam and clotted cream! They then topped off the night watching The Lovely Bones DVD. As you can see from the photograph of the cake – I was tired (that’s my excuse and I am sticking to it) and didn’t even realise that I had missed out the “h” in Birthday and that the “a” in Happy looks like and “o” *palm slaps forehead* Let’s face it though – we’ve all been there – when you are so tired you alternate which eye you look through and let the other one rest – behaving like someone drunk! Ah well, thankfully it tasted okay – so no harm done – but must try to ensure when I make her proper birthday cake that I am careful with my spelling!!! It’s strict rest now until Tuesday tea time so that she can be strong enough to go to the restaurant for her birthday dinner.
The Dave has been wonderful this week, he makes us all laugh and is far more of a morning person than I am. He has endeavoured, whenever possible to get up with our Hairy Trio and let them out to the loo and feed them for me, so I can have some extra time in bed. He has been understanding and supportive of my aches, pains and fatigue, always lifting my spirits with his quirky humour. He cooks when he can so I can rest, he shops, runs errands and does whatever he can when he is able to and not out working. I am so thankful for having found him and count myself exceptionally lucky. The Dave has a bad back – something that has plagued him for years (he also has a bad calf and bad elbow too!) – anyhow – he ventured off to the osteopath on Friday and was introduced to a new piece of equipment – where you are strapped by your ankles in a machine and hung upside down – the phone went once The Dave was upside down and so the therapist went off to answer it, leaving my poor hubby hanging, literally. He was very apologetic on his return to still see Dave, rather red in the face by now, still hanging because he hadn’t realised that he didn’t know he could have easily up-righted himself with a small arm movement – seems to have done the trick though – after further back cracking and manipulation The Dave feels improvement and less pain in his back.
I have no idea what will happen this week, I am just hoping that I manage to make Tara’s big monkey birthday cake without any mishap AND spell everything correctly. I am crossing everything I can in the hopes that both Tasha and Tara are well enough to make it to the meal on Tuesday – but if not then we will organise a special take-away banquet instead. Most of all I am hoping for a healthier week for the girls, if that is possible and a reduction in Tasha’s hallucinations, pain and fatigue.
Catch you next week 🙂