The Day They Say Maybe......

Just over 6 weeks post op from my latest arthroscopy and I had a follow up appointment with the consultant. Well I thought I was going to see the consultant but I was sent an appointment at the polyclinic where I saw a very young looking registrar.

The Registrar read through my notes explaining that the main stage 3 arthritis is on my femur in both knees. There are areas of the knee which are stage 1 and stage 2 but predominantly it is stage 3 on the femur and patella. I was surprised to be told I had also received a steroid injection both knees while in surgery. The reason I was surprised is I have felt worse since the surgery and surely with a steroid injection I would have been feeling some sort of benefit.

Myself and my husband put across our concerns and explained how OA was impacting our lives. It's not just my life that it has affected it is also affecting my husbands life and that of our 3 children. I am pleased to say that the young registrar sat and listened to us, which is something that hasn't really happened before. Experience of the hospital is that we are fobbed off, spoken over and dismissed because I don't fit into the neat little boxes or text book definition that they go by.

The out come of our longer than average appointment is that the registrar is unable to make the decision to replace my knees. He admits that it is what I need and if I was older than it wouldn't be an issue and I would be put on the waiting list to have a bilateral total knee replacement. The rather young registrar (I must be getting old!!!) dictated a letter while we were sitting there explaining the situation and that we need to be seen by consultant himself at the next available clinic as it would have to be the consultant who will have to make the decision whether to replace my knees or not. If he says no, then he will refer me to a different hospital and consultant for a second opinion. The registrar explained that he may well be able to recommend a surgeon that might perform the surgery. If we got for a second opinion I am hoping to go to The Royal Orthopaedic Hospital at Stanmore, or UCL, or The Royal London.

Please don't think I am going into this blindly. I am very much aware that replacement joints have a lifespan of 10-15 years and the revision surgery can be more complicated. My mother in law has had her knee replacement for 15 years and it is still going strong with no problems. My father in law had a hip replaced for 22 years before he needed revision surgery. I need my life now, so I can enjoy my kids.Go out as a family. Be able to hold my kids hands while they still want to hold hands and hold my hubby's hand when we go out. At the moment I can't do that because I walk with crutches.

The baby faced registrar has referred me for a wheelchair assessment as getting out and about outdoors is getting increasingly difficult. I think there is a waiting list of several weeks so I will keep you posted on progress as I find out myself.

This week has seen me do a full week in my new job. Meet the team and get stuck in with my new role in Risk. It's great! The team have made me feel very welcome. The all know about my arthritis and are so helpful. I had a DSE assessment for my work station. I work on a laptop and my new boss got me a monitor and keyboard to plug in which helps with posture as the screen is adjustable in height. I am having a workplace adjustment assessment on Tuesday to check my chair and desk.

Travelling into London has been a bit of a mixed bag and I am relying heavily on painkillers to get me through the journey.

Saturday! Paul has been out with his friends today for a bit of R&R. Harry Monster had a birthday party in Romford at the bowling alley so it was me who had to get Harry and the twins ready and into town. I woke up feeling positive that I could do this....any mother should be able to do this. One the whole and all things considering it didn't go too badly but I did struggle. Unable to walk at the pace the kids were walking at we only just managed to get there on time. I was getting increasingly frustrated with myself as the morning went on which the kids unfortunately picked up on. While Harry was at his party myself and the twins get a table in McDonald's and they had a happy meal. Not the greatest culinary delight but a treat for them nonetheless.

I'd managed to put a load of washing in the machine. I thought I would be able to get it on line to dry with it being a glorious day....I think the first this year! I am so lucky to have helpful children to assist me unloading, sorting and folding as I wouldn't have managed it.

Being on my own today with the kids has made me realise just how much I rely on Paul. I feel guilty for the amount of help he needs to give me on a daily basis. We should be enjoying married and family life. I love him to the moon and back, just hope he realises. My worry is he will come to resent me over time.

This time last year I was excited about taking part in the London Marathon, the the London and Edinburgh Moonwalks. I can't believe how much things have changed. I can't walk a metre without sticks let along 26.2 miles. Here is a pick of my medals for my achievements last year!

Anyway, enough of being down! The kids want toad in the hole for dinner tonight. I'm going to ge them to make the Yorkshire pudding batter....it could be messy!!! :-)

Snazzy Sticks

Arthritis is no fun and like everyone else I have good days and bad days. As I can only move around with the use of elbow crutches I decided I wanted something colourful, something to cheer-up what could be a depressing situation so I took the advice of the lovely Cara and searched the internet and found some snazzy sticks. I do have a couple of walking sticks too but at the moment I am unable to use them. They were great for keeping in the car or when Paul took me out for dinner...more sophisticated!

Switch Sticks are a good company, not too expensive and delivery is quick and from what I remember free!

Here are some pictures!

This is my selection!

These are my latest buy. £49.99 but well worth the money. I got these to cheer me up after my last surgery as I was very down. I took them on holiday with me too!

This is a close up of my walking sticks. It's a shame I can't use them at the moment. These sticks also come in fold up!

When we see the consultant next week we are going to discuss a wheelchair assessment. My GP things it would be a good idea for when we are out and about. I know the waiting list can be several weeks and they can give you a voucher to the value of an NHS chair if you didn't want to have an NHS one. I am hoping that there is a colourful selection somewhere if the assessment says I need one.

So far today the sun is shining, my 5 year old son has gone to football practice with his Daddy and I am having some quality time with the twins.

Getting a Grip!

Its been a strange couple of days as far as figuring out how I feel about everything! Tuesday I was told I had been approved for a Blue Badge which is going make things easier for me when we are out and about. Wendesday I recieved notification that I had been successful with my application for DLA (Disability Living Allowance) Im really not sure how I feel about it all.....it certainly isn't elation. It's a bit of a double edged sword. I have finally got recognition that I have a disability but I would give it all up for a working and healthy body.

Last night was a BAD night. Kness, hips and pelvis are extremely painful, I couldn't get comfy, couldn't get to sleep and was reduced to tears. Paul was wonderful as ever. Getting me some painkillers and holding me gently. The morning isn't much better so I have made an appointment with the GP. A recent ultra sound scan showed my pelvis had a lot of fluid in it and I want to discuss this and my pain management.

I am sure there are many people going through the same experiences but not everyone seems able to talk about having a disease which is seen as an old persons disease.

I mentioned in a previous post that the kids had some friends round and had created some yummy cakes! here is some pictures of the fun that was had and the creations made.

My kids keep me going and watching them have fun made my day!

 

I've mentioned before about having snazzy sticks here is a picture of my most recent pair

Its not a great picture but there are a number of websites that sell coloured or patterned walking sticks and crutches. My way of thinking is if you need to use a walking aid you may as well have nice looking set! I have the same pair but in blue and I was sitting on the tube a few months ago when a random bloke came up to me and pointing at my sticks said "What are they?" to which I replied quite shortly "What do they look like?" I wasn't expecting the following answer...."Ski Poles" I didn't know what to say other than "Should have gone to Specsavers Mate!!" The man was wearing an NHS hospital pass so I was confused as to why he thought they looked liked ski poles. He has no idea how much I would actually like to be able to go ski-ing!

A friend sent me a message asking if she could borrow my London Marathon Medal to show to her group of Rainbows next week. Of course I said yes but it also got me thinking about how my arthritis has deteriorated over the past year. This time last year I was getting ready to take part in the London Marathon for the charity Sense. I knew I had a problem and the physio had been advising me. The course was tough...26.2 miles is a long way! I hurt but I finished it. It was a great achievement and I will always remember the atmostphere, the support from friends and family and the public on the day. The cheering really keeps you going. To cross the finishing line was amazing! I am sad that I won't be able to run or power walk again. Riding a bike is painful too. I enjoyed taking part in events and raising money for charities. I look back and I am glad I managed those achievements.

This is me last year....

Unfortunatley I can only walk now with 2 elbow crutches and we are considering asking about a wheelchair for when we are out and about as moving about is a slow and very painful process.

When I was active I could keep my weight down, now I struggle to keep my weight stable. I've put on a stone in weight but I shouldn't complain too much. There are people in a worse situation than myself and I do have a wonderful family and circle of friends around me.

Time to start setting my small goals. Today's will be to help Paul prepare dinner...spaghetti bolognese!

 

Badges of Blue

Today I had my Occupational Health assessment for my application for a Blue Badge. The assessor was lovely, very understanding and took everything at an easy pace. She gave me details of help I may be able to get and to look into. The out come of the assessment is that I have been awarded a disability blue badge for 3 years. After the 3 years I will need to reapply and go through the assessment process again. Hopefully the badge will help with parking and being closer to shops etc as the arthritis and pain affects my mobility. Paul usually does all the shopping because I am unable to.

The badge costs £10 and people who are eligble need to apply through their local council. The application form isn't too long and the guide notes make filling it in easier.

I'm not quite sure how I feel about it all. I never thought I would need too go down this route but at least it was simple one which should help.

I've also applied for a freedom pass, the council have written to my GP for more details so at the moment it is a waiting game to see if I am eligible for one.

One of today's joys was watching the kids decorating cupcakes and cakepops with 3 of their friends. They had lots of messy fun and made some wonderful yummy creations. It's lovely to hear the sound of childrens laughter in the house.

Crete Adventures Part 1

We have just returned from our 10 day adventure in Crete. Wow! and what an adventure it was! Anyone who has young children will know the stresses of travelling with them, tie that together with reduced mobility, pain, busy airports and a language barrier then you have the makings of a horror movie. Having said that we had a positive experience. The children were well behaved, the staff at Gatwick and Heraklion airports were wonderful and my lovely hubby was as amazing as ever...thank you Paul xxx

Our adventure started at 2:30am on Thursday 28th March in Hornchurch. It was COLD! the cases were packed, the kids all had their trunkies and the neighbours had the keys to the house and instructions on feeding the mog. We dressed and bundled 3 sleepy but excited children into the back of the car and headed for Gatwick Airport. The M25 was a dream.....only a few lorries and cars. A far cry from the M25 we all know and love to hate :-) The car was parked with ease and we got the bus to the terminal. Checking in was a breeze, no queues. Security was fast tracked through due to the travel company faxing the airport about my mobility problems. We checked in with the assistance desk, had breakfast and myself and the family were taken to the departure gate on a golf cart type buggy. Once again we didn't have to queue and we got straight on the plane. Amazing and stress free. We couldn't believe it.

The flight was about 3 and a half hours. The kids took it in turns playing on the iPad then George and Moo slept for an hour or so. The skies were clear and we got a good view of the Alps.

On arrival at Heraklion Airport we were met by the travel reps, boarded a coach with help from Paul to get me on board and made the journey to the resort. The weather was warm and breezy which was a welcome contrast to what we left behind in London!

The room was a suite! Huge! Accessible by a lift so I didn't have struggle with the stairs. 2 bathrooms which had walk in showers/wet rooms so I could have a shower. A bath to dunk the kids in. 2 bedrooms....one for the kids and one for Paul and myself which had a queen size bed...enormous!! and a balcony with a sea view! Just what the doctor ordered...a beautiful accessible hotel and warm weather!

The stress of travelling with young children and not being able to walk was taken away by the help and organisation of the travel company and the airports. If anyone is concerned about travelling just talk to your travel agent, we found that Thomson and Sensatori were very helpful!

.................................More later on our Crete Adventures.......................................