The One Where I Get Some Wheels!

The OA has steadily been getting worse and my mobility declining. This is nothing new and is not surprising. My appointment with the orthopaedic surgeon is on 7th June which is only a week away. I guess I am holding out for some positive news from him on the decision to replace my knees but know that it isn't going to be as straight forward as "yes Mrs Manning, you're on the waiting list and will get a surgery date within the next 6 months" I am going to have to fight  my corner again, but I am prepared for that, bring it on!

The consultant sent a referral to Wheelchair Services and they issued me with a self propelled wheelchair. I have named this the Skoda model. It is heavy and drives like an overloaded shopping trolley round peak time Tesco! I searched the Internet and came across a lovely lightweight self propelled chair in red....the red ones go faster you know! ;-)

Here is me in my new Ferrari Wheels! Now the wheelchair is by no means me giving into the arthritis. Yes it sucks that arthritis has put me in this situation, but the wheelchair will give me more options for getting out and about with the family. Where I struggled, held everyone back and had to decline going to some places because of mobility issues and ended up in excruciating pain, I can now say Yes! The chair is lightweight and easy to manoeuvre. To be honest with you, me and the Ferrari Wheels are getting on quite well!  A little tip for those looking for a wheelchair, you don't have to pay VAT on it if you are disabled or suffer with mobility issues caused by diseases such as OA. There is a very simple form to fill out either online or in the store. The NHS can supply you with a wheelchair after an assessment or they can provide a voucher to the value of what they would have given you. You need to go to a supplier on their list if you chose the voucher option. If you want to go down the NHS route you will need to be referred to Wheelchair Services in your area by either your GP or Consultant at your hospital.

A couple of weeks ago it was my eldest son's 6th birthday and we went to a caravan park in Clacton with 10 other families for the weekend. It was a good weekend and the kids had a fantastic time playing and running about. Saturday was Party Day! It was also another little girls birthday so they had a joint pizza party! Harry wanted a Spiderman cake...so this is what I made for him!!

 Harry loved his cake! and I have to say it was a rather yummy vanilla sponge with butter cream and jam filling!

May has been a bit of a cake month. A friend as me to make her daughters 11th Birthday cake, the guide was pink and black colour scheme, vanilla sponge and 2 tiers! Here is what I created...and I know the little lady was pleased with the cake created for her birthday!

I was also asked to make a wedding cake for another friends daughter. I am completely humbled to be asked to make a wedding cake because it is such an important day in a couples life. My brief was White, Purple with a little pink. My friend had bought a cake topper so I didn't have to make one. Here is the wedding cake! (without the topper!)

Have a look at my facebook page full of my edible creations when you have a minute! Its called Cake Anyone? https://www.facebook.com/pages/Cake-Anyone/497115613651635

With it being half term and bank holiday all rolled into one we decided to take the kids to Diggerland in Kent for the day. I took the Ferrari Wheels and was pleasantly surprised and pleased that Diggerland is wheelchair accessible. I even managed to go on a couple of rides with the help of the staff and my husband. Diggerland has 4 sites around the UK and it is an excellent family day out. I would give it 4 Stars out of 5, definitely would recommend it.

Tuesday was NOT a good day for me. I managed to get to work in the Ferrari Wheels but it was raining and I got soaked to the skin. The OA was particularly bad and I was struggling. I cried on the PA's shoulders at work because it all got too much. Tara, the PA was lovely and told me that she understood how I feel as her partner has RA and that I shouldn't struggle and should go home to rest. I phone the hubby and he drove to Central London with the kids to pick me up from my office. Wednesday I had an emergency appointment with the GP who examined me and signed me off work for 3 weeks to allow the flare up to subside. Work has been fantastic and I am able to work from home which is great. It means I don't go down as sick, I don't lose any money and I don't have to travel to Central London. I was really worried about how work would react and I am sure that all people with OA or RA who are able to keep working worry about taking time off because of flare ups. It does help to have an understanding employer. At some point I may have to think about either reducing my hours or even giving up work if I am turned down for knee replacements.

I think that support groups are important and I am a member of a number of excellent ones. To be able to talk to people who understand exactly how I feel and what I am going through is great. I don't feel so alone because I know I can log on and chat to people. It also works the other way too, I am there to offer support, advice and help to other people in the group.  Sjorgrens Support Group is a friendly group https://www.facebook.com/groups/454589521294750/ with people who have a range of immune disorders and arthritis'. Osteoarthritis Sufferers and Rumatic Arthritis Sufferers group https://www.facebook.com/groups/318063891599818/ is also an excellent group, its based in the US but has people from all over the world. It is interesting to hear other peoples experiences. These 2 groups are on Facebook and are closed groups....just click on the links and request to join. I like closed groups because whatever is posted on them stay on them!

One thing that made me smile the other day was to see on the Arthritis Care page on Facebook https://www.facebook.com/ArthritisCareUK?fref=ts my Blog was awarded Blog of the Day!!! How wonderful!! The Arthritis Care page is another excellent page for the latest news on arthritis and treatments. Support Groups and info pages are Social Media and Networking at it's best!

With the warmer weather arriving, and hopefully staying for a while, I hope you are all having a good day and the pain is easing up.

Until next time..... x

Heads Shoulders Knees & Toes!

Hello everyone!

It's been about a month or so since my last post. Lots has happened in my world although I am still waiting for a decision on knee replacements which will hopefully be at my appointment on 7th June, please keep your fingers crossed for me!

I have good days and bad days.....today is a particularly bad day for pain and I have had to take the day off work. The manager I support is lovely and very understanding. If I had brought my laptop home last night I would have been able to work from home but as it is I didn't and today is a sick day. I'm snuggled in my pj's with a beautiful patchwork quilt made by the brilliantly talented Liz Draper letting the tramadol and co-codamol do their stuff.

I have recently had an x-ray of my right hip due to the increasing pain in it and my lower back. I struggle to lift my foot and sleeping at night is not happening due to discomfort. I have another week or so before my GP receives the results of the x-ray. He says he wants to check the stage the OA is at in my right hip. Over the past few weeks my tramadol has been increased to 100mg slow release tablets, then increased again to 150mg slow release tablets. I take one in the morning and one in the evening. I am also still taking up to 8 co-codamol 30/500mg. The GP tried me on Baclofen for muscle spasms. Well....I couldn't function on them. I like to be awake when I am awake if you know what I mean! :-) So the Baclofen has been stopped.....and I am glad to say I am more awake.

My wheelchair assessment form went missing somewhere in the hospital internal post. Cheryl, the secretary for Mr Kumar, my ortho surgeon was amazing. She chased it up and couldn't find it, she wrote another letter and saw the surgeon to sign and send the letter again. She phoned me 3 times in one day and twice the following day to make sure I was OK and to confirm that she had personally sent the letter. Cheryl went above and beyond and her genuine care really touched me. I will be sending a thank you card to her at the hospital as I feel it is important she is thanked and recognised for the help she gave me. I'm currently waiting for the wheelchair assessment, I've had the initial questionnaire and just need the appointment now. As much as I don't want to have to have a wheelchair the reality is that it will help me getting out and about with the family. When I am bad I will be able to get to work without having to struggle on my sticks and risk falling or being pushed over on the busy commute into central London.

On the employment front I am still working although some days are more of a struggle than others. My line manager has completed a DSE assessment and I had a workplace adjustment assessment. Work have given me a new lightweight keyboard, a fancy footstool, a raiser for my monitor, the desk has been raised as it was too low, and a fancy new chair to help with back and hip pain. The chair is being delivered and fitted tomorrow. I would recommend anyone who is working and has arthritis or any illness or challenge to get their employer to do a workplace adjustment assessment. It makes working a bit easier and more comfortable. My employer has been fantastic and the adjustments made to my working environment have helped a lot.

Enough of the miserable stuff! We have also had some nice times over the past few weeks. We are very lucky to have the use of beautiful Ravenswood in Tring. On bank holiday Monday we took the family and invited some of their school friends and their families. It was a warm, dry day and the sun was shining. A new fire pit was dug in a new less boggy location. People cooked sausages and burgers on the open fire and the kids had a wonderful time playing and exploring. The forest was filled with the sound of children's laughter and friends catching up.

Harry...my eldest! Loves helping collect fire wood!

The forest is stunning and changing all the time. The trees are just getting their green leaves and everything is fresh and green

Moo relaxing in her chair by the camp fire!

George with his lunch!!

The perfect place to play Frisbee!

Me in the middle front row with our friends. I couldn't get through some days without the support of my family and these people! They always make me smile and they have beautiful families.

Friends xxxxx
Being in the woodland poses challenges too. The ground was dry and firm under foot which was helpful. I didn't do anything!  Paul and our friends did the fire and set up. we took tables and chairs and I was helped in and out of the camping chairs! I was SO nice to be able to relax in beautiful surroundings with friends. A couple of our friends camped over night the night before and we arrived early so we could catch up before everyone arrived. I don't have a picture of them but the memorable part of the day was Paul and Roger cutting down a dead tree...it took a while and Penny supervised the men with their saws and axes!!

Its our Harry Monsters 6th Birthday on 19th May. I couldn't tell you where the last 6 years have gone but my little fella is growing up! He had a small party with 3 friends on Saturday. They went bowling then on to Pizza Hut for dinner. He had a great time. It was good to see the boys having a fun time. Paul was great too helping them with the bowling balls and me and the other mums sat on the side lines cheering them on. Next week we are going to a caravan with the friends in the picture and their families. We are there over Harry's birthday and another little girl will be celebrating her birthday too so we are having a joint birthday party for them both on the Saturday. If the weather is good then it might be BBQ time! I'm hoping my pain eases off on Friday as I have a days holiday and I am going to be making Harry's birthday cake.....he wants a Spider Man cake! Watch this space for pictures!! LOL!

My lovely hubby makes gorgeous bespoke handmade jewellery. He has been a talented gold and silversmith for over 20 years. We were contacted by an old work colleague who is setting up a bridal business wanting to borrow pieces for a photo shoot. It was agreed that she could have the ivy leaf collection which Paul made with love for me on our wedding day and she would be in touch with the details of the shoot. We waited and didn't hear from her but later found out she had already had the photo shoot without letting us know she no longer wanted the pieces of jewellery. Paul wasn't impressed as he prides himself in his work and common courtesy is to let people know one way or another. Anyhooo Paul has made some beautiful pieces. There are more pictures to go up onto his Facebook page of a sapphire and diamond eternity ring set in 18ct gold, it's stunning!  Please have a wander over to his page PMR Creations and have a look through the photos of his work. We do need to update the page. Please click like on his page!  https://www.facebook.com/pages/PMR-Creations/116260918440896

Thank you for taking the time to read this longer than normal edition of my blog. I hope those of you who are battling with any form of arthritis are having a good day and not letting it beat you.

Until next time, keep safe and keep well xxxx