Sunday, 22 March 2015

This Week

Hello.......... This week at the Summerhouse has been a bit mixed, I could just share with you all the good parts, avoiding the bad,  but that's not what I tend to do on my blog, I've thought long and hard about whether I should share some more details of my ongoing  health problems in this post, as I don't want to bring anyone down, but it's a reality of my life, so here it is bad all.

The week started well with my Christmas Crocuses finally flowering in the house, well worth the wait.

 There was the gift of a new scarf too, the sun starting to get too strong (when it's out) for my  medication induced sun allergy, so this will come in very handy, I'm loving the gentle Spring colours too.

This week there have been way to many medical appointments, three in total. It's just no fun being a medical mystery, I got the brush off from yet another consultant.  Who went from saying  a few months ago 'I will get to the bottom of this', to this time saying 'Well Chronic Fatigue Syndrome, Lyme disease, POTS are all such a grey areas of medicine at least it's nothing serious, try and stay positive' 

 As for my pancreas which completely stopped working for a few months last summer, leaving it now damaged but at least working again he said 'Of all my thousands of patients, yes you are one of the rarer ones, I can't tell you what happened, but it is linked to you're Chronic Fatigue Syndrome as when your CFS relapses you're diabetes gets worse !!' .

If I do have CFS I've never heard of it effecting the pancreas like that, the Lyme Disease Association when contacted said Yes Lyme disease could do that, but of course according to NHS consultants 'It's not that', it's a 'Grey Area' you know.

I could have screamed at him had I the energy, 'not serious !!!' it's had a serious and devastating effect on my life for the last twenty years !!! Mostly housebound, only out of bed a hour or so a day, having to use a wheelchair, organs packing up with no explanation, is pretty serious to me. Sorry rant over, sometimes it's just so frustrating.

My GP was much more helpful and ordered a load of blood tests, saying 'You have never had a definitive diagnosis, it's got to be something endocrine and autoimmune, maybe something completely new but we just don't know what, so hopefully something will show up in the tests, I'm not getting my hopes up though.

Merlin didn't fair much better, he's a cat with a very sore ear at the moment and he made the vet aware of it by having a diva style hissy fit on Wednesday, he's not a happy boy and left both the vet and I bleeding to make his point.  So I'll be spending the next week chasing him around the house with a bottle of ear drops. It's not going to be easy with energy levels at zero,I'm spending most of my time stuck in bed at the moment four months into this relapse.

At least spring in coming along nicely out in the garden,

I do love this time of year.

The Polyanthus are waiting patiently to be planted in the Summerhouse window boxes, Pinks Yellows and Purple this year.

Fridays Eclipse was a strange one here at the Summerhouse sadly it was way to cloudy to see, but it did get very dark and gloomy, not a bird was to be found in the sky, the air kind of still and eerie.   Amazing that it fell on the Spring Equinox as well.  

It felt odd not to be assembling my Springtime wreath this year as is my tradition on the solstice, but it's currently in the craft exhibition, at least it will be back in time to be decorated for Easter.

So most of this week has been spent feeling pretty rotten, recovering in bed from various medical appointments, sadly no crafting was done at all, but at least these pretty roses were here to cheer me up.  Fingers crossed I'll be heading out of this relapse soon.

Clare xx


  1. Bless your heart! I hope someone can help you soon. Beautiful flowers! Stay positive and I'm praying for you.

  2. I can't imagine what you are going through, all I can do is send you best wishes and hope you can get some help soon.

  3. I am so sorry to hear how rough things have been for you. It is hard to deal with your illness but made all the worse by being told it cant be 'real' because it is just too hard for them to get to a diagnosis. Sadly healthcare professionals love patients who fit into nice neat categories. Many of the healthcare structures, despite saying they are all about person-centred care are actually designed only for single conditions or specialties. If they were truly person-centred then patients would not be trotting up to multiple clinics and specialists. Instead the care would be built around the patient's needs.

    I am sending you and poor Merlin lots of loving and healing wishes to strengthen you. Take care.
    Ps please tell me that after Merlin shredded you and the vet that you didn't do that pet owner classic of saying "Normally he's very friendly.....?"! Good luck too with the ear drops. Its taken me over a month to get good at putting Magic's eye drops in and for her to stop fighting as though her life depended on it.

    1. No I always warn the vets as he has a bit of a wild side at time, normally I warn them and he's fine and they end up looking at me as it to say 'what she going on about' this time however he was not so well behaved nothing worse than ear ache xx

  4. Sending my love, sounds very frustrating for you! Enjoy your spring flowers and keep crafting. It's nice to hear updates whether they are good or bad! Blogs are a bit like a online diary shared with friends x

  5. How frustrating.Have you tried antidepressants?My sister in law had CFS and was put on Prozac.She reckoned her body not her mind was depressed.After years of suffering,having no energy etc she now is so much better.She has tp pace herself but has got some of her life back.Just a thought.Do keep us updated even if you are not feeling good.It helps to share.Barbara

    1. You name I've tried it over the years antidepressant had no effect what so ever, I've been told that with CFS there is a spectrum from mental health through to a very physical illlness, I'm right up the physical end. With CFS all test results are supposed to be normal, mine are not they show imflammation and problems with the immune and endocrine system. I have aspects of lots of different illness from Addision to MS to arthritis. Diabetes POTS and Dysautonomia the list goes on, It like I have my own pic and mix style autoimmune disease. Glad to here your sister in law found something that helped.

  6. I am sorry that things health wise are rotten for you right now. I am glad though - and amazed and in awe - that you can look to the good things with lovely flowers and the pretty scarf which was a lovely gift for you.

    I hope that things look up soon. xx

  7. Very sorry to hear about your health problems, Clare. If only flowers had healing powers, yours are so pretty and colorful and I hope they offer some small comfort.

  8. Oh Clare, I'm so sorry you are having such a rough time at the moment, hopefully the bloods may help them get to the bottom of things. It can be so tough living with chronic diseases. I love the scarf, I too am having to think about covering up as the Lupus makes me photosensitive. Glad you are able to find some positives in the flowers and beauty of spring. Take care, praying for you. Gentle hugs, Sharon x

  9. Bless your heart Clare!! And you should share with us, how will we know to keep you in our prayers and positive thoughts if you don't let us know you need them? I wish you the very best on this latest blood work. Trying to stay positive is easier said than done of course. I am so, so sorry you continue to go through all of this.

  10. Somehow I missed this post, Clare... My husband had a unique medical history that baffled doctors for much of his life. It was frustrating and sometimes infuriating and I am glad you vented to us some of your feelings about what you are going through. I admire so much that you continue to live creatively in the midst of ill health. You appreciate, share and create much beauty, and I thank you for doing so. You inspire me, and I am continuing to cheer you on
    from across the pond :-) xx