Celebrating ....

It's been a tough week but I think I am coming out the other side. Adjusting to the tiredness and stopping much of what I had been doing is hard. I have been reminded of how much you can't do when both your hands and your feet hurt. Hoovering, baking, ironing, sewing, knitting - all things I love (well apart from the ironing of course) have had to be curtailed. I can do them but only for short spaces of time before the pain becomes too much. I have an appointment with the consultant on Tuesday so we will see what he has to say. I am so thankful that I can go and see him so quickly. 

Today we are off to London to see the ballet of Romeo and Juliet with Chloe and Ed.  I am really looking forward to being out and hoping that I cope. We are celebrating the end of our mortgage payments - we are now the proud owners of a house! Who would have guessed it takes that long!

This week in-between resting I have been making Christmas cards and sewing a Christmas robin which has been great fun. 

Smile.....

“Smile every chance you get. Not because life has been easy, perfect, or exactly as you had anticipated, but because you choose to be happy and grateful for all the good things you do
have…” Quote found on MarcandAngel.com

 This quote is a reminder to myself to look for all the good in today, to seek joy and to find it and to reflect on all my many blessings and not to focus on all I haven't got. 

My appointment with the GP on Friday left both Paul and I feeling rather sad - it felt like a backwards step and reminded us of the journey we had been on and would rather not repeat. She is referring me back to the rheumatologist who I saw originally which is great as I know that he will make the right decisions regarding treatment and that I will leave my appointment feeling like it will all be alright. He has that gift! My pain is increasing and I am now aware that I can't do some of the things I could do a month ago. Walking any distance has become tricky because of the pain in my foot. And my energy levels are very low. All of this is Ok as the treatment was very effective last time and I am sure it will be again. But I have to get my head around the change in circumstances again - and having to say a lot more no. I also have to depend on others a lot more - ho hum! So blood tests this week and hopefully seeing the Dr in the next couple of weeks.

Ok - enough moaning and groaning. We had an unexpected pleasure when Chloe and Ed came to lunch yesterday on their way back to Kent from Cornwall. It was so lovely to see them.

This week - coffee with friends, flowers, tutoring, blood tests, bible study and on Saturday - London to see Romeo and Juliet.

Chronic Babe?

I have found a wonderful bog which is written by a young woman who is coping with a collection of chronic conditions. She calls her followers Chronic Babes. What a great name! I think maybe I am too old to be called a Babe but I really like the idea. On her blog she shares ideas for coping with a chronic disease and there are lots of helpful tips. I will be going back to this when I have some more time and putting into practice some of the ideas she shares. Her latest list is 100 ways to answer the question - How are you? It is a problem I often have. As you can imagine I get asked this often, probably every day. And knowing me I expect you can guess I like to be honest but that isn't what people necessarily want to hear and they certainly don't want a great long catalogue of all my ills! So this list is helpful. Here are some of her suggestions 

• Do you want the short or the long version! 
• I'm AWAP(as well as possible)
• I'll let you know when I figure it out! 
• Ready for tomorrow
• I'm taking it easy 
• Bunch of grunts, gurgles, and other random noises) pssh, fft, mmhm,
• Give me a chocolate bar and I’ll be fantastic
• Somewhere between blah and mehUnder construction 
• As happy as a clam, a clam that’s
  been cracked open, doused in lemon
  and shot down the gullet of some
  tourist in a tacky Hawaiian shirt 
• I’m feeling really grateful for this beautiful day. 
• I don’t feel that great, but my hair looks awesome

So if you meet me and ask me how I am you might get a rather random answer!  

If you ask me today I will be answering - I'm feeling grateful for this beautiful day! 

I am glad it's not raining and  I am off to pilates with my new ankle and hand supports which hopefully will help me to do more during the session this week. I am looking forward to seeing the GP tomorrow and starting the process of getting sorted and particularly of finding out what painkillers I can use that won't cause more damage to my kidneys.  

 

New week and sunny days

A new week beckons and thankfully it is starting off with a sunny day. I am getting my head around my change in energy levels and more pain and have gone back to only trying to do one thing in a day with more resting. It is hard to cut back and frustrating to see things which need doing and not to be able to do them but better to do less and be able to manage than end up being sick and cancelling things. Chronic illnesses are so hard and maybe even more so for the families who have to adapt to cope with the ever changing situation. I am so thankful I am married to someone who is laid back and takes each day as it comes as some days I am well enough to clean and tidy the house and cook all the meals and other days I end up in bed and he has to do it all. I am good at planning but can be rubbish at carrying out the plans!

At the weekend we had a wonderful visit to the caterers for the wedding. It was great to meet them and see their set up and to leave feeling very reassured that all was in hand. They raise pigs and turkeys and we had fun seeing them. Although very sad to hear that a tree had fallen on some of the turkeys in the winds the other night. Some of the turkeys were in a separate cage as they were still traumatised by the event. Not sure how you tell that a turkey is traumatised!

This week I have coffee with friends,tutoring, pilates, flowers and bible study and some bulb planting. A less busy week with more gaps for resting. I have bought some more knitting so that will keep me busy along with the pile of books I am reading for church.

I hope you all have good plans for your weeks . Thank you for those that have been in touch I do love hearing from you and hearing about your lives. It is encouraging to hear of those who read this blog and pass it on to friends who are struggling or facing difficulties in their lives. I sometimes feel I am writing into a vacuum so it is good to hear.

5 keys to contentment

Our house has been a very quiet place over the last 4 days. Ben is in Birmingham with Anna and of course Chloe went back to Kent on Friday. I have spent most of the time in bed and I am feeling better for the rest. I did manage the hoovering yesterday and was getting on quite well until the hoover broke! I don't think it liked the quantity of dust it had to hoover up! The hardest thing has been to get my head around the creeping back of the RA. I have been so fortunate to have had very little pain over the last 4 years once the drug kicked in and stopped the progression of the disease. Even my mastectomy was coped with just on paracetamol. I think this maybe another learning curve on my adventures with contentment. It is so much easier to be content when everything is going well - how much harder when life doesn't go our way! 

Interestingly the Mayo Clinic suggests the following for finding contentment 

• Invest in relationships
• Express gratitude
• Cultivate optimism 
• Find your purpose
• Live in the moment. 

Obviously for me I would add invest in your spiritual relationship with God.  Spend time in prayer and praise to the creator of the world. This is all wise advice and interestingly is what I think I have been learning in the past 4 years although I haven't put it so eloquently. 

So  today is a new day - a new sunny day. So I will venture outside (K - I will have a dose of vitamin D), finish the hoovering (my wonderful man has mended it) and cook a comforting casserole for tea.I will be thankful for all that I can do and live in today trying not to be concerned for tomorrow for it will have enough cares of its own.

I don't know all the answers......

‘I don't have to know all the answers. I just have to know that God knows, that he's good and that he loves me.’ Rick Warren – Pastor of Saddleback Church

I needed to hear this today. I am still struggling with feeling unwell after last week. I am also struggling with more pain in my hands and feet and we are beginning to wonder whether the rheumatoid (RA) part of my autoimmune is creeping back. This would explain why my evenings have been getting worse recently. It is so hard to describe the tiredness that comes with RA – it is like having the early symptoms of flu where every bone aches and everything takes too much energy, along with a general feeling of nausea which leads to sickness if I don’t rest. I have a GP appointment next week and I will ask her to refer me back to see my rheumatolgy consultant. So we shall see. It may mean I need to go back on methotrexate to stop the damage to my joints. Although we will have to check that with the renal team so that we don’t damage my kidneys any further. As ever nothing is simple with me! Pain killers are also tricky as I can’t take many usual tablets without causing problems for my kidneys. Thankfully paracetamol are ok.

It is easy to slip into self pity – poor me! But I need to go back to what Rick says – God knows, he’s good and he loves me. I need to listen to that.

Wedding planning

A whole week of no blogging - did you miss me? The week has been as I expected - wonderful and exhausting! But as hoped we have the outlines of a wedding. It was SO lovely to spend the time with my girlie after the longest time we have ever spent apart. We have now talked almost solidly for 4 days! So many words and still I feel like I didn't ask everything! Her new life is so busy both with work and friends. We have booked in 2 weekends between now and Christmas so at least we will see them soon. 

I will give you a little flavour of our week without any details! I am trying hard not to talk too much about the wedding as I do feel it is Chloe and Ed's news and they should be the ones telling people. So this week we have: 

• met with flower arranger 
• met with cake maker 
• organised the marquee and decided what would go in the marquee(who could have guessed there was so much to decide about a marquee)
• emailed photographers and caterers 
• decided on colours 
• decided on general design of bridesmaids dresses 
• met with Ed's mum and chatted about all things wedding and bridesmaids
• tried on wedding dress (thankfully Chloe still loved it) and chose accessories
• bought some material 
• discussed many little details without deciding much!

We also managed to watch a film, go to a craft fair, go clothes shopping, made macaroons, looked at holiday photos, caught up on A&E news and pysch.......

And bought my outfit! Which I can tell you about. Unexpectedly the bridal shop had a sale of mother of the bride outfits left over from when they had a shop. I had already decided what colour I wanted and they happened to have a beautiful dress and jacket in my size in that colour at a very reduced price. I ummed and ahhhed  over it as I had thought I would buy it in the Spring but decided in the end to go for it. It needed adjusting and a wonderful seamstress came in on her day off to see if she could make the changes to the neck line that needed doing. So it has gone off to be adjusted and then I will decide whether I need a new hat or will use my beautiful hat I already have. It is a sparkly dress and I love it and Chloe loved it. Amazing!

So as you can imagine this weekend I am recovering! Chloe has gone home for a packed weekend with friends from Southampton. I am wishing I had her energy!