I thought it was about time I gave y’all an update on all things Mawer. My hubby, the lucky so and so, has jetted of to America for 10 days on a “work” (aka holiday) trip!  He has been in Florida and now currently in Miami enjoying the sunshine and all things car related you can push his way – I think you can safely say he is in petrol-head heaven! He’s been watching drag racing, been to huge car shows and classic car museums before having a go at shooting in a range and I understand he has even been shopping too – just not quite sure what he has purchased, wondering, should I be worried? Just as long as he doesn’t bring anything like this home as we have way too many American classic vans (which is his latest craze, prior to that it was drag racing cars) on the drive as it is!
Positive points from this week: – 
  • We have now received a letter with a date for Tasha to see the specialist Occupational Therapist for rehabilitation therapy assessment for the 12th March – the OT we were referred to comes with great recommendations from other ME sufferers – so we are hoping and crossing our fingers that she can help Tasha.
  • Tasha has been prescribed ranitidine twice a day to try and help with stomach pains and cramps when eating and is now able to eat a little more than before – although meat is still difficult for her, so mostly fish and veggie gluten free diet.
  • After having to cancel our previous appointment as the girls were just not well enough to travel we are also off to the osteopath this afternoon for both girls to have a much needed manipulation and lymph drainage treatment, which I know makes them feel rotten the next day but the day after that usually see’s some relief from the pain.

So, quick updates on the girls….
Tara;

Is now less severe than Tasha and we feel coming out of the acute stage which is allowing her to be able to have a small social life with strict pacing. She can attend two, one hourly, home tuition sessions a week and has now managed to gain a little more control over her M.E. and can recognise signs of impeding relapse and reign in her activity to try and minimise the extent of it. However, she is still severely limited and only sees her peer group about once a fortnight and has to be exceptionally careful on how she manages her energy levels prior and post social contact.  We still struggle with her weight due to gut issues and having difficulty absorbing fat, but with modifying her diet, she is slowly gaining weight and with it some strength.  However, over the past week she has suffered a relapse and has mostly been in bed recovering and has been highly miffed at the timing as it was half-term and she wasn’t well enough to hang out with her friends or go anywhere at all.  BUT *hopes not to be tempting fate* it looks as if she is climbing out of the crash and getting a little more energy – so hope next week will be a much better and happier week for her.

 Tasha;
Sadly, is becoming more severe by the day.  The smallest exertion has a huge physical impact – she can barely come up or down the stairs (even enquiring if we could get a stair lift installed to help her on her worst days).  She has also been newly diagnosed with arthralgia & chronic gastritis on top of her ME and blood pressure issues which is further debilitating her.  We are awaiting an appointment for abdominal scans to see if it is “just” the ME causing the gastritis or something more.  The new medication is helping with the pain but not the other digestive issues – so we need to look further into that.  She is also suffering more frequently from intermittent paralysis and heart palpitations which if continues will need re-examining too. As a parent it is heartbreaking to see your child suffer so much each and every day and be helpless to alleviate their suffering.
My eldest daughter, Keisha;

Is doing well at College, but has recently, due to having her medication changed, suffered from episodes of anxiety and migraines – hopefully they will ease as her body adjusts to the new medication.  She was, however, well enough over the half-term break to go to a gig at Rock City and thoroughly enjoyed herself – but is now back to the books and studying ready for her exams.

Over the past week she felt awful seeing how much her sisters are suffering and felt compelled to write a blog about how she feels, sitting on the sidelines and observing her sick sisters – she writes;

“I love my sisters so, so much and it kills me when they’re in a bad phase. ME has become such a significant part of my life so in some ways I’m used to it, I know that emotional and mental stress has a physical impact on both Tasha and Tara, so I have to be careful not to stress them out by having people over or causing a fuss, however in a lot of ways ME has taken away two of my best friends. 

Tasha is only a year younger than me, and before she got ME we would always go out together, we’d go to gigs and have fun and we wouldn’t have a care in the world, but now I can only take her out for a few hours in her wheelchair on a good day if my mum drops us off and picks us up from wherever we’re going. Tara’s had ME from a younger age, so she manages to cope, but Tasha had experienced a good social life with a huge circle of friends and she’s always been able to do anything, so getting sick and becoming practically bed-bound has been really tough for her. I have so much respect for both of them. They’ve been so strong through everything, and they find ways to stay positive despite all the shit they have to go through, they don’t let their ME stop them from having dreams and ambitions and fun.They always put on a brave face through everything, and they are two of my biggest role models in life. 


Tara especially has had to grow up so fast, and although she’s not been in education for like 4 years, in some ways she’s smarter than people my age. She’s always so thoughtful and she’s the first person I go to for comfort or advice, she’s hilarious and witty and she’s definitely smarter than a lot of people her age in the way she just gets stuff, Tara has an old soul in a young body due to living with a debilitating chronic life altering illness, creating advanced maturity in her perception of the world around her. 


Tasha is one of the strongest people I know. Before she got ME she was an aspiring hairdresser, she was getting high grades in school and she had all the doors open for her. Now her original career choice is no longer a possibility, but she never lets it get her down. She puts her passion into her art, she makes the most of her talents and she’s a brilliant photographer/blogger/tattoo artist. I admire her strength and determination so much, both of my sisters are amazing.”


Lastly what about me?  Well, my aches and pains are still there and the fatigue is still a problem, BUT my blood pressure is now down to a healthy level which means no medication required.  PLUS myself and hubby have been attending a weight loss club over the past few weeks as we are both horrific foodies and when we get together can be terrible!  So the knowledge of having to step up onto the scales in a group every week is keeping us on the straight and narrow (mostly) except for Monday evenings (weigh day) when you “treat” yourself and reward yourself for a weeks hard work – but shhhhhh, don’t tell anyone.  So far I have lost 2lb shy of a stone and hubby, the jammy git, has lost just over a stone!

Now – my mission for the next few weeks is to drum up support for M.E. and try to get as many people on board to organise fundraisers for Invest in ME in the run up to ME awareness week in May – if you aren’t sure about what M.E. is then you can find out all about it here.

Also, if you belong to a company, workplace, school or social club that likes to support a charity annually then why not suggest Invest in ME and look at all these fundraising ideas in the blog I wrote here, which would help raise money to fund biomedical research to find treatments for sufferers and a hope to a healthier future.

Or you could simply make a small donation to my Walk for M.E. 2014 sponsored walk justgiving page here – we will be going out, as a family, Tasha in the wheelchair and Tara walking as far as she can before sitting out whilst we walk the rest of the way.

If not a donation perhaps you could just share the link with your friends and family instead – we don’t mind which – anything that may help raise awareness and/or funds for research would help make a difference.

x~X~x