Wedding and a day at the races

I haven't blogged much about the wedding plans as I feel that it is Chloe and Eds' news to share. But I thought you might like a little taster. Most of the big things are sorted - we have the church, marquee, band, photographer, flowers, caterer, ice cream maker, Uncle Tom Cobbly and all booked! We have chosen dresses and Chloe is making meters and meters of bunting. We are now in the knitty, gritty of waistcoats, ties, shoes, hats and colours! Sometimes the organisation can seem daunting but recently I have been feeling moments of joy as I imagine the day. This weekend we will have a little taster - at the hen party - where I expect much laughter. 
My dress is bought and is being altered at the moment. Then I will have to decide if I need a new hat! We have lists of our lists! Thankfully spending time in bed I can use the time to make more lists! I have my uses! 
A little glimpse of the day - Chloe and Ed are getting married at our church in Barkham and having the reception in a marquee on the field next door. Chloe is having 5 bridesmaids. We are doing the flowers in the church ourselves with help from the flower arrangers at church but having a florist for the bouquets. 
I am very proud of how calm and organised Chloe and Ed have been. In 2 months they will be Mr and Dr Unwin. 
Today is Paul's birthday and he is off to the races. He is going to a taster day at Ascot which should be fun. 

A Winter's Tale

 Yesterday I managed to go up to London to the Royal Opera House and saw the new ballet A Winter's Tale. It was so, so beautiful. 
I was very thankful for efficient trains and taxis which meant that I was able to go door to door with very little walking.  Thankfully it also has 2 intervals so that I was able to get up and walk a bit to stretch my back. 
We had lunch in the amphitheatre restaurant which was lovely too.(they even provided a cushion for my back)  I have discovered that if I have 2 starters  rather than a main course I can manage so much better. My appetite has been quite affected by the azathioprine.

 The ballet is one of the most beautiful I have ever seen. So cleverly produced, wonderful scenery and backdrops, great costumes and the choreography is exquisite. The emotion pours out of the dancers and you are swept along with the story. I was so delighted to be able to go - having had to stay at home last time Paul, Chloe and Ed went.

 Today has been a bed day to recover and although I am sore it is ok. 

This week - preparing for the Hen party at the weekend, coffee with friends and lots of resting! I am slowly coming to terms with the changes in my life. 

 Last week I realised that I needed to stop tutoring. It has taken me a while to come to this decision but I have been letting people down. I will so miss having these smaller people in my life but its not fair to them. Accepting the changes is important because it then becomes easier to be content. This is the journey God intended for me and I need to walk in it. Trusting that he goes ahead to prepare the way.

 Nothing - absolutely nothing is outside of his plans and I can trust him with it all - just enough light for this step.

Not all doom and gloom

Sorry for my lack of writing this week. I had hoped to be writing of recovery but it has been a very up and down week. My back remains very much the same and seems to have settled into a constant hum of pain which, although helped slightly by painkillers, never goes away. It limits so much that I do and is frustrating. I am unreliable as I can never tell whether any day is going to be a good day or a bad one. I am sure all this isn't helped by the length of time I have now been particularly unwell this time. I started methotrexate at the beginning of December - so 4 1/2 months ago, and it is now 5 years since my hands first starting swelling. Wow! Chronic illness is so hard to cope with because it changes your life. Some days it is really hard to think that I am only 54 not 104!!!!! 
However there are many moments of sunshine and although my writing above makes it sound as if all is doom and gloom I have so much to be thankful for. Paul patiently cares for me - never complaining as he cooks tea again! My family support and love me. My friends bring laughter and news into my days through texts, emails and visits. My church family are committed to praying for me - despite my many requests. I have lots to look forward to - tomorrow a visit to the ballet in London with Paul, Ed and Chloe ( all being well), Chloe's hen party next weekend, wedding planning ( we are onto the nitty gritty details now), wedding dress and mother-ofthebride dress trying on, maybe hat buying, Chelsea flower show...... Etc. I have gone back to using my wheelchair a bit when I need to walk any distance ( good exercise for Paul) which makes more things possible and gets me out of these walls. On good days I can drive too which helps. I have also been loving my swing seat in the sunshine- even if I have needed my quilt to keep warm. Our garden is looking lovely - I so love the spring colours which God uses to paint the gardens with. 
As ever thank you for your emails, texts, messages and visits - I love hearing about your lives. 

Looking forward to stable.

I have just returned from a  rheumatology appointment which was very encouraging. My consultant wasn't there today but I saw a different one who was very thorough. He felt that my back is unrelated to the mixed connective tissue disease and therefore is just one of those things (Paul is unconvinced ).  If this is true it should hopefully just get better - slowly! He checked the x- Ray results and said that there was nothing to be concerned about. We are now so used to everything being connected it is hard to believe that I can have anything which is just normal!!!!! He gave me lots of wise advice about my kidney function and the levels where we should be concerned which I really like as it gives me a feeling of control. He also has graphs - always good to have a graph! So just one more increase in my azathioprine next week and then we shall leave it for 4 months and hopefully have a period of stability. I will continue to have regular blood tests to keep an eye on my bone marrow, liver function and kidneys. This is really encouraging as it means that all being well I should be stable for the wedding. He did notice that the skin on my face is tightening and my mouth is getting smaller as the skin tightens. Hopefully that will stabilise.  Stable is such a nice word. 
We are looking forward to spending time with family over the weekend and enjoying some sunshine. 
May I wish you all a happy and blessed Easter. 

Is it a weapon?

I am now the proud owner of a new weapon of mass destruction! The Occupational therapist was very helpful yesterday - it would have been so helpful to see her 5 years ago when I was first diagnosed. I have, through trial and error, worked out many of her suggestions to deal with the difficulties my hands present to every day life. However she did suggest some other 'aids' I could use to make tasks easier. She has also made a splint to be worn at night on my left hand,to begin with, which will hopefully prevent the damage getting any worse. If I get on ok with this she will make another one for my right hand also. Thankfully Paul doesn't sleep with me ( my nights are too disturbed or disturbing) otherwise I think he might be covered in bruises as I hit him with the splint!!!! I also have some exercises to do which should help maintain the function in my hands. My grip is considerably down now and explains why carrying pans etc and chopping vegetables is so tricky. She was keen to stress a little of everything is fine but not to do any repetitive actions where my fingers remain in the same position for a long time. A little knitting is fine but not hours of it! Writing or typing is fine but only a few minutes not pages! She suggested I give up trying to cut up most vegetables and buy ready cut or ask for help! Not something I am good at doing! 

This weekend we will be planning some gardening, maybe doing a bit of gardening (if my back allows) church and Chloe and Ed coming for Sunday lunch. I am hopeful for some sunshine. I hope you have lovely weekend plans which also include a bit of the outdoors. 

Step by step

I am so sorry I haven't blogged for a long time. I have been hoping to let you know my x-ray results but they still haven't arrived 9 days later - even though the radiographer told me GPs were getting them in 5 days - ho hum! I have decided to think that it must be fine as hopefully they would have phoned by now if there was anything of great concern. 
My back remains painful and I have had a few sorry for myself days - but after gentle reminders from my ladies I have changed my attitude. It is so easy to slip into a 'poor me' attitude and 'I don't deserve this' and 'I have had enough to cope with without back problems'. Once you start thinking like that it is a downward spiral of negative thinking and moaning and groaning takes over. If I believe God has a plan for my life (and I do) then I need to trust him every day with that plan - not just on the easy, sunny days! I still have much to learn about contentment. 
Today I am having a blood test - hoping for enough blood on one go instead of 2 phlebotonists and 7 goes! I am also seeing the occupational therapist to discuss hand splints to help stop further damage to my fingers. I am also hoping she may have advice for coping with my back pain.
I am really enjoying seeing the sunshine - we are feeding a neighbours cat and I am enjoying our daily little walks to her house. It isn't very far and is all I can manage but it is lovely to be out in the fresh air. 
I read the poem below on a blog recently and was struck how well they fit with my blogging name - Just enough light for the step I'm on. It was given to Emma by a lady after she had given a talk on worry. I hope she doesn't mind me sharing it with you.

Step by Step:

He does not lead me year by year

Not even day by day

But step by step my path unfolds

My Lord directs my way.

Tomorrow’s plans I do not know

I only have this minute

But He will say “This is the way,

By faith now walk ye in it.”

And I am glad that it is so

Today’s enough to bear

And when tomorrow comes, His grace

Shall far exceed its care.

What needs to worry then, or fret?

The God who gave His Son

Holds all my moments in His Hand

And gives them one by one.

Emma Scrivener who blogs at http://emmascrivener.net

Bath photos

Beautiful Abbey window

One of the Bath diptychs

 Sorry these photos have taken a few days to arrive. It is always more complicated than I think to get the photos from my phone onto my blog! Sadly I didn't take many photos but these do give a flavour of our holiday. 

Yesterday was a hard day- as hospital days are tending to be now. I waited nearly an hour to have my blood taken and it then took 2 phlebotomists 7 goes to get enough blood to do the blood tests needed. I give my blood in drips into tiny needles!

Flowers suggesting the empty tomb

The resurrection

Bath theatre

 Then a further hour and half wait for my back x-ray. Ho Hum! Paul was beginning to think I had been lost in the system! By the time I got back to the car my back was very, very sore from sitting on hard chairs.Still at least it is done. Now I wait for the results. I should know next week. My blood test results are back this morning and show increased inflammatory markers but everything else is stable. It would be great to find out that my back was just normal back pain - that everyone gets now and then. But with my history my thoughts are that it is probably connected some how to the connective tissue disease. The very bad news would be if it was the return of the cancer. Thankfully my blood tests aren't showing any problems with the increase in the dose of azathioprine which is great and the nausea is settling again after the increase. So I guess I will increase it again next week after I have seen the rheumatologist.

My back is slightly better and I am taking less painkillers which is good but I am very limited in what I can do which is frustrating. Little steps I guess!

The lounge in the flat

Lovely boat

 Thankfully there is always something I can be doing quietly and I am never at a loss as to what to do.
I am enjoying the signs of new life all around. Our garden is full of colour and makes me smile daily. I am so grateful for the beautiful world we were given to live in. Maybe I am learning patience at last!

Paul in one of the comfy beds

Our next holiday will be here in July!