The journey continues ......

So the journey continues. I saw a lovely new rheumatologist today who thankfully had spoken to my consultant and had a plan. I wasn't very keen on the plan but it is a plan! We discussed many options - my preferred option of not doing anything else didn't go down very well! Their biggest concern is that without any more drugs my hands and feet will get worse and I will then struggle to walk or use my hands at all.  Obviously that is not a choice I want to make. The drug they want me to take is called azathioprine which is quite like methotrexate and can have similar side effects. So the plan is to take a very low dose of steroids (I know I said I would never take them again) just for 2 weeks. If they work then it will be worth trying azathioprine. If they don't work then I won't have to take the risk of azathioprine and we will have to try something else. If I do take it then they will monitor me very carefully with weekly blood tests and I would stop if I get any side effects. I know this is all very complicated and I am feeling a bit bamboozled by it all. But we have a plan! 

In the car coming home Paul and I discussed how this has taken us full circle back to the beginning when I was first ill. What a journey this has been! And it continues on. I will be back to regular hospital visits and lots of blood tests. I will need to avoid bugs and carry hand gel! The next couple of months will be adjusting to these new drugs but hopefully I will be sorted by the time of the wedding. 

As ever I trust that God is in charge. Jesus walks close to me travelling this journey with me. There is a plan for my life and this is part of the plan. My struggle (as ever) is that I have my own plans and they don't fit with this new plan so I need to adjust my plans. That is ok it just takes some time to get my head around this new normal. Life will be at a slower pace and there will be more saying no to things. More coffee and less rushing around! More accepting that there are things I can't do, certainly for now. More work on contentment - right here right now! This is where I am meant to be and this is my journey. 

So the next few weeks will have no definite plans while I cope with any side effects, and visits to GPs, hospital etc..... Then all being well I will be able to have another new normal! 

Improving.....

So we begin another week. Thankfully I am continuing to improve and managing to do more all the time. On Saturday we went to London to see Giselle at Royal Opera House with Chloe and Ed. I was fine until the journey home when I was absolutely exhausted and it was a real struggle. But at least I coped.  As the lights dimmed in the opera house I was thinking how amazing it is to be able to be there. So much that we take forgranted until we can't do them.  Just walking somewhere is now difficult for me and I have to consider the energy used for any activity and weigh it up against whatever else I would like to do that day, and then chose. I then spent Sunday in bed - a small price to pay for my day in London. 
I now have an appointment to see the rheumatologist on Wednesday to discuss what we do next. Unfortunately the scleroderma is creeping back in my hands and my skin is tightening. Hopefully it will  remain just to my elbows like last time. I am aware that I will have to make some big decisions on Wednesday so do be praying for Paul and I. The dr will probably ask me to take steroids for a couple of weeks to see if it works. Although it will be a much lower dose than last time I am not at all keen to do that. They will also be discussing another drug which would be similar to methotrexate to add to the plaquenil that I am already taking. It is quite scary to be risking massive side effects again. I know we will all be much more aware that I have to take all side effects very seriously. But I still have to go through them to realise I have them! If you see what I mean! So we shall see what is suggested and I will think very carefully about what I decide to do. 
This week I have coffee with friends, hospital appointments,  flowers and bible study.  Plus plenty of resting. It is so lovely to be cooking again and I am loving my new mixer. 
Thankfully Paul is much better and has managed to go back to work today. Thank you for your prayers for him. 

A sorry pair........

Life is plodding on! We had a lovely weekend with Chloe, Ed and Hilary. Bridesmaids dress designs are chosen and material decided on. It was lovely to see the bridesmaids together ( apart from Hilary).  So wedding plans are coming on nicely. Most of the big things are sorted - it is now the details that we need to sort. Chloe is making 100 feet of bunting. She has cut out all the triangles and just (mmmm just!) needs to sew it all together. It is hard for her to be sorting out a wedding in her first year as a Dr as she is so,so busy. Especially this rotation - she is working in elderly care in the busiest time of the year for the elderly. 

Unfortunately Paul is now unwell with what could be labarynthitis. He has had it before and it makes life quite tricky. He can't drive and is struggling with any computer work (especially tricky as that is his job) The Dr has given him some tablets which, thankfully, are helping. So we are a sorry pair. I am still recovering slowly. I have better days and worse days. I am very bored of being ill! 

Yesterday my new toy arrived from ebay - a kenwood chef and I am delighted with it. A friend had lent me hers over Christmas and I had realised how much easier it is to use than a hand blender. As my fingers are often quite sore, anything which involves holding in a stationary position is difficult. So yesterday I made gingerbread - yummy! 

As I am writing this I can hear the birds singing away and am grateful that it is not too cold. I am SO hoping that spring comes early and that I am better by then. 

Thank you ....

Thank you so much for all the messages, phone calls, texts and emails after yesterday's post. There is nothing amazing about me but I am blessed.
Thankfully yesterday was a better day. I decided it was time to venture out into the real world. I haven't been out except to Joy's or the hospital since the beginning of December. It felt quite strange to drive and I popped to tescos to buy a few bits and pieces. I was struck by the noise - it is quite quiet in my cosy house. When I came out of Tescos there was a beautiful rainbow shining above the shop and I was reminded of God's promise to never leave us. 
It felt  good to be doing normal things - how much you miss normal stuff when you can't do it - even shopping! I am having to pace myself but at least I have a bit more choice about what I do. I am still avoiding germs and not hugging in case people have bugs.
This weekend is going to take quite a lot of pacing. Chloe and Ed are coming home and Chloe's friend Hilary who is going to be a bridesmaid. We are then all going to Ed's  mums on Sunday to discuss bridesmaid dresses - lovely.
I hope you all have lovely weekend plans.

Sadness and joy.....

Beautiful spring flowers......

 Over the last few days I have been struggling with feeling sad. As I have started to feel better I have realised what I have been through and how much further I still have to go. I am also aware that this may be my more normal. Chronic illness is so hard to cope with as it is always there - just peeping around the corner. I had reached a happy medium of being busy and also of resting. But this has really thrown everything back.

......that arrived in the post yesterday.

 I am now back to just doing one thing a day with a few home bits and pieces. I know it will get better still but I have to accept that with the rheumatoid rearing its head again I have to accept that I have more limitations. Anyone who knows me and all of you who have followed my journey will know that I am a planner. New year - new plans! But this year I can't see very far ahead to plan. Even the exciting things that are to come this year feel hard as I don't know how well I will be. 

I apologise for this post - it is full of self-pity but I did always want to be honest here and speak of the joys and the sorrows, the ups and the downs.

As I have thought about this I have realised that I have stopped looking for the joy in each day and have focussed on all I can't do. How easily we take our eyes off that and then it is a downward spiral into self-pity.

A wonderful present of yellow daffodils promising spring is coming

 So I have included photos of the things that have given me joy recently. Today I will be looking for more things to be thankful for. I am going to try and focus on what I can do rather than what I can't. And I am going to try and stop worrying about all that I can't get done.

Beautiful deer

My evening companion

Holiday booked to St Ives

A pre-loved mixer coming soon

Daffodils planted in the autumn flowering now

My pile of books to read - plenty to keep me going!

I am going to put my hand back in the hand of the creator and trust that He knows what He is doing. Together we will take little steps into the future and I will try not to look beyond today!

Slowly slowly........

Thank you for all your good wishes. I continue to slowly get better. I have started cooking again in little bits, with plenty of rest in between. I am aware of the battle my body has been in and the length it is taking to recover. Thankfully with little steps I am returning to my more normal. It is hard, after such a long time, to get back to normal things. Thankfully my body seems to be adjusting to the new drug I am taking and the sickness is much better. 
This weekend Chloe and Ed are coming home and we are doing bridesmaid stuff - yippee! I am really looking forward to talking weddings. 

Turning a corner......

Hurrah - I seem to have turned a corner in my recovery and now am getting a little better each day. My energy levels are still very low but I am able to do little bits. We have decided that I will avoid crowds of people though until the end of January to avoid the nasty bugs that seem to be going around at the moment. I am enjoying looking at the lovely sunshine which began with pink skies this morning. I can hear birds singing - they have been quite silent with all the rain we have been having. I am also looking forward to meeting up with my ladies this afternoon. What a lot of catching up we have to do as I haven't met with them since the middle of November. 
I hope you all have lovely weekend plans - mine are to stay in my warm house and continue to get better! 

Canula - I don't think so!

Well yesterday didn't go to plan - what made me think it would!!! Warning details!

I managed to starve for 6 hours and wasn't sick and arrived in plenty of time despite the flooding. I booked into reception as asked and waited. We were half an hour early so I didn't expect to be called early but when we still hadn't been called 20 minutes after I was due to arrive Paul suggested we find out what was happening. Ho hum! No one had told the radiographers I was here! Anyway we were then collected and taken to a cold waiting area and I was given 1.5 litres of 'poison' to drink. Obviously it wasn't poison but it was revolting. I managed to drink it and half an hour later was called  into the scanner. I was now very cold and feeling rather sick. The radiographer then chatted through what would happen - scan my tummy, loud banging and a lady telling me to hold my breath etc and then a drug would be given and contrast via a canula. At this point I said - I don't think that will be happening. I have had nothing to drink for 6 hours and I am freezing you will never get a canula in! We did the first part of the scan which as I am slightly claustrophobic was very unpleasant. I couldn't do my usual 'going to another place' trick as I had to concentrate on breathing in, breathing out and holding my breath. It was a very long ten minutes. The radiographer then came to put in the canula and after a long time of looking at my hand - he had a go. He then phoned a consultant who came to try. After looking at my hand in great detail  and discussing my foot - he gave up! So I had the rest of the scan without the drug or contrast needed so the pictures won't be as good or helpful as they should be. It would be helpful if they mentioned on the form that a canula needs to be fitted and then I could have at least kept my hand warm. By the end of the scan I was feeling very sick - yucky. I was really glad when it was over. The results may take a couple of weeks. The radiographer was kind enough to let me have a look at the scan as I has never seen an MRI before. It was amazing. Both Paul and I were struck by how amazing modern technology is - when it works!

So now I am recovering from the side effects of the 1.5 litres of 'poison' which have kept me awake through the night. I feel a bit like I have been attacked. At least I have my warm, dry house to recover in and my wonderful husband at my beck and call.

Monday morning blues

Monday morning and Ben is back to school and life returns to routine - although I am still not part of that routine. I am recovering and am starting to do little bits around the house but that is all. I still get exhausted by the smallest of things. I am sure you can imagine I am frustrated and trying not to be! I still fill my days with plenty of things while lying in bed or sitting by the fire but it isn't the same as doing life. I am going for little walks in between the rain down pours. 
Today I am going for an MRI scan ( or is it a MRI scan). This is to check whether my terminal ileum has recovered from the  'rare' unnamed bug or whether I may have also developed crohns ( would be quite unlucky to have this as well I feel). This means no eating or drinking for 6 hours - not something my kidneys will like. Then drinking some horrible drink half an hour before the scan which then takes 30 minutes with my arms above my head - just where they like to be!!!!! I will be glad when it is over, and I can celebrate with a nice cup of coffee. 
The rest of the week is about more recovering and seeing friends for coffee! I am looking forward to seeing my ladies on Friday and catching up on all their news. Thank you for your emails - it has been so lovely to hear people's news. 
I hope that you all settle back into your routines ok and that your homes are all safe from the flooding. 

New year mmmmmm

So the new year begins - not as I hoped with a great 1st of January getting back to being busy but with a day in bed with my bucket? Unfortunately yesterday was a sick day! No idea why but hey ho! Today is a new day and I am feeling better. This recovery business is long and boring. It seems I can only make tiny steps to getting back to a more normal life. A month of doing nothing means that I am quickly exhausted by the simplist of things - walking up the stairs, a bath, getting dressed all need to be recovered from afterwards! So I can only plan little things for my day. Today my plan is to cook mince, walk to the park and tidy a drawer in my bedroom. Along with a bath and get dressed of course. What an exciting life I lead! 
I was going to post a picture of the pile of books I have to read but unfortunately I can't work out how to put photos on my iPad from my phone. Hopefully my boy will help me later. 
I have been thinking of all of those of you having to go back to work today. I remember how hard it is after a lovely Christmas holiday. For those of you who don't return until next week - make the most of it. It will be over all too soon.