Spoons Used & Borrowed.

The Spoon Theory is a well known theory and it really is a good one for explaining to people who don't understand what it is like to live with chronic and debilitating conditions. It also is like a special language used by those who do understand to explain how they are feeling without having to go into details. I don't know about you but sometimes I just can't be bothered to explain yet again that I have osteoarthritis and yes I am aware that I am young, and no a little bit of exercise won't make everything better and losing weight won't get me out of the wheelchair and allow me to run around with the kids. I'm not overweight, although I have been in the past and I have lost 8 stone....and put on 1 since being immobile but it is frustrating to be told by complete strangers with no medical knowledge  "just lose a bit of weight and that will sort out your joints" I'm sure I am not the only person who is asked "what have you done?!" or "have you been ski-ing?" and when you reply with I have arthritis get the reply "oh are you sure? You're a bit young for that" or "I have a touch of arthritis" I really wish it was only a touch of arthritis and I could take the odd pain killer or anti inflammatory when I get an ache. Only the frustrating reality is I'm allergic to NSAID's (non steroidal anti-inflammatory drugs) such as ibuprofen, naproxen and diclofenic so I can't treat the inflammation. I have to take tramadol which is an opiate based painkiller and co-codamol just to get out of bed in a morning and control the pain. Unfortunately there are days when Mr Tramadol and Mrs Co-Codamol can't beat the pain into submission and it takes everything I have internally not to break down, pull the duvet over  my head and cry, believe me there are days when this is probably all I can do. I don't want my kids to see me give up. I still want to be the fun and loving mum I was the other year. I also want to continue working, earning money to provide for and keep the roof over my family's heads.

In the attempt to keep working and not be signed off permanently I was successful in my application for an Access to Work grant and they fund the taxi fares to and from work. I work in the office in London twice a week and the remaining 3 days a week I work from home. I am very lucky to be able to do this. I found a local taxi firm which was cheap as work had agreed that I would pay the fares and claim the money back through the grant myself. Tuesday was my first day back in the office and I was nervous...just like starting a new job. The taxi driver picked me up at the agreed time and helped me with my laptop bag, opened doors and made sure I was ok. The same driver picked me up at 5pm. The journeys are long but London traffic is notorious. So when Thursday came around I was confident everything would be ok. Oh how wrong was I?! It was a different driver, he picked me up at the agreed time but when he reached the destination he told me the quote I had been given was incorrect and wanted me to pay more than I could. There had been a mix up with the postcode of the office but I couldn't pay more than the agreement with the ATW people and what the taxi company had provided. All these details had been going backwards and forwards from the grant people and the taxi company but the mix up had not been picked up. The taxi driver had pulled into a side street and locked the car doors and shouted abuse at me for nearly 20 minutes. Now, he is aware that I am disabled and unsteady on my feet and unable to walk unaided so what did he think he was going to achieve by locking me in the cab....I can't walk so I'm not likely to run off. The vile piece of work of a taxi driver only let me out of the car when I said he was intimidating me. I paid the amount that had been quoted and agreed and the driver spat at me while shouting "we won't be picking you again" This driver had just lost the taxi company an account which would have been used on a regular basis and would have generated a lot of income. I was now shaken, extremely upset and stranded in London as I am unable to use public transport alone. Work were fantastic, very supportive. A formal complaint has been made and the taxi driver reported. I have been in contact with ATW and my grant has been amended. Work are setting up an account with another taxi company and I will not have to pay upfront as they will be handling everything for me. Fingers crossed from next week I will be back in the office and being driven by a reputable and understanding taxi company who don't verbally abuse and leave stranded vulnerable disabled women.

Paul was my knight in a blue Mondeo! He drove to London with the kids in tow and picked me up when work finished. The journey home was LONG! It actually took over 3 hours from central London to our home in Hornchurch. The kids were really good, I couldn't be more proud of them. Its not fun being cooped up in a stuffy car in traffic going at snails pace and they get bored. Luckily 2 of them went to sleep as it was past their bedtime when we eventually got home. Once the kiddies were safely tucked up in bed, Paul held me tightly while I sobbed. All the fear, stress, shock and upset just had to pour out. I had to get all the 'what ifs' that were running round in my head out and banish them for good because I knew I would still have to make the journey to work in a taxi another day.

Thank goodness for Bank Holiday Weekends! 3 days of not having to worry about work or travelling! Saturday was wet....very wet! I saw pictures that friends were posting on Facebook of the flooding that was happening in Southend and Canvey Island. I couldn't quite believe that we had gone from hot and dry to hot and wet over night. It was a bit monsoonlike because it was still humid and muggy and very soggy! I was secretly hoping for dry weather for the Sunday as we had arranged a Lamb Roast in the woodland that is Ravenswood to finish off my birthday celebrations....and keeping my fingers crossed worked because Sunday was warm and most importantly DRY!!

Woodland poses challenges for those who are unsteady on their feet, suffer with painful legs, hips and backs. The ground is uneven...its a woodland! But I was determined to have a good time. I needed to be in the tranquil surroundings of Ravenswood to relax and just be. The Ferrari isn't suitable for the forest so it would have to be a crutches event and plenty of sitting down. We arrived later than we would have liked due to people not driving with due care and attention on the M25 and were caught up in the tail back of traffic caused by an accident involving 3 cars. When we eventually pulled up into Ravenswood a feeling of calm washed over me and I felt as though I had come home and the woodland was giving me a 'hello, welcome back hug' This kids immediately started playing and having fun in their 25 acre natural playground and Paul set to work lighting a fire and getting the spit ready for the lamb. People started to arrive, tents were put up. The canopy was filled with laughter, the sound of old friends catching up and new friendships being born. The smell of cooking lamb and rosemary wafted through the air. Our lovely friends brought their 2 week old baby boy and I got to have a cuddle with the incredibly cute Morgen. The lovely Koren looked beautifully radiant, motherhood certainly suits her even with the sleepless nights a newborn brings. Around the fire people sang songs and one couple even had a dance. I felt really blessed to be surrounded by such good friends.

I wanted to share some pictures with you of the forest and this weekend.

Cooking dinner!

Carving!

 Serene

 Beautiful, we just love this place

 

Paul wanted to bring back an old jeep body from the woodland which he has been storing there for a few years so that he can get on with restoring it. When opening the glove box we found a family of Gliss Gliss (edible dormice) Gliss Gliss are protected and only found in something like a 10 mile radius. Paul had to gently rehome the little furry creatures only a few feet from where they were found. I think you would agree they are rather cute!

 

I used up ALL of my spoons and I used a fair few spoons borrowed from the coming week. I hurt from my head down to my toes with my lower back and hips being the most painful and the worst they have ever been before. When we got home and the kids had been bathed and put in clean clothes Paul lifted me into the warm bath he had run for me. I lay in the warm water letting my body relax and wishing the pain to go away. Topped up on painkillers I curled up on the sofa unable to do anything else, had a visit from a good friend and her daughter who don't care that I wasn't dressed and only wearing my dressing gown. Unfortunately I had to leave Paul to unpack the car and tidy up. Was it all worth it?! Oh yes! I used all my spoons and some, to enjoy myself and spend quality time with my lovely family. A few days on and the nasty Mr OA is still making me pay for a day/evening of enjoyment.

 

 

Friday this week brings my pre-op assessment at Stanmore for the first of my knee replacements and the reality that something is going to be done to help me is just round the corner. 

Birthday Laughter and Adventures!

Wow! What a birthday week! The best news ever arrived! The date for my right knee replacement is going to be 11th October. The left knee will be done shortly after if all goes well. FINALLY I feel as though I have been taken seriously by a consultant who has managed to look past my age, which now has another year notched onto it as I reached the grand age of 33 last week. Having a confirmed date makes a world of difference. To know that something is going to be done to make my life easier. Yes the initial pain is going to be hell by all accounts but that pain is going to be worth it. To be able to go out with just a stick instead of the wheelchair will be fantastic until both knees are done! I'm looking forward to being able to hold my kids hands, and of course Paul's hand when we go out.

We are members of the Battle of Britain Memorial Flight Official Club and we decided that we would take a bit of a diversion on our trip to Scarborough and have a look around the BBMF Visitors Centre and have a guided tour round the hanger at RAF Coningsby. The kids were on count down, counting the sleeps. They each have their own individual favourite planes and it is wonderful to see their enthusiasm towards iconic planes that played an important role in our country's history. The Ferrari was packed into the boot of the car so I used my sticks. We had a wander around the visitors centre and looked at some of the displays before our guided tour with Gordon round the BBMF Hanger. We knew the Lancaster, one of the Spitfires and a Hurricane were on their way back from Blackpool and we were keeping our fingers crossed that we would be lucky enough to see the flight come home. And yes we really were in for a treat. Gordon guided us round the hanger and engaged the kids as well. We learnt about the aircraft and their history. By the time we got to the end of the hanger the Spitfire flew over head, appearing out the dark clouds that had just finished giving a heavy downpour. The kids were so excited...and so were we! The Spitfire landed followed shortly by the Hurricane. Big smiles all round! Duncan Mason was flying the Hurricane and came over to speak to the group of bystanders that had gathered at the end of the hanger. Harry was very pleased to get his picture taken with him!

What a genuinely nice guy! He even gave my Harry monster his flight map, which we have laminated for Harry.

 

The plane that everyone was waiting for came into sight. The powerful sound of the Lancaster's engines filling the sky.

 Awesome!

 

 

The hanger and visitors centre is disabled accessible, you need to use a manual wheelchair in the hanger and they do provide wheelchairs and chairs to sit on throughout the tour. We thought they had thought of everything! A trip back to the shop to buy some souvenirs and treats for everyone and we were on our way to Sunny Scarborough with a wish to visit the BBMF again! They are on Facebook so please have a look at their page to see where they are flying, interact with other people and find out how to become a member! https://www.facebook.com/BBMF.Official?fref=ts

 

So we were now 3 hours from our destination and travelling in the car certainly does have an impact on Mr Arthritis. Joints seizing up and painful back, but I didn't care, I was one my way to see my family to continue my Birthday celebrations which have certainly got off to a flying start ;-)

 

We check into our 'usual' B&B in Scarborough, The Cordelia. It's not the easiest of B&B's as far as a disabled person is concerned but the stairs are shallow enough but there are a lot of them. The breakfasts are worth it. We've been going to this B&B for a number of years and it didn't occur to me that I would struggle. The stairs were the main issue and it took me 10 times longer to get up the stairs using my sticks than the rest of the family but such is the old the person my body has turned into.

 

The kids played on the beach while I watched from the side lines in the wheelchair. Mum, Dad and Grandma got to see me for the first time in the wheelchair. Dad HAD to get a picture...I don't think it was a good one! Catching up with everyone was great and the kids had a whale of a time. Harry even went on a 3 mile walk with his Grandma and Shadow.

 

One the way back  home we made another diversion to meet up with the lovely Cara. We have been speaking for years now and have never managed to meet up. We have so much in common from Twins to Arthritis. What fun we had! We raced the Ferrari!

The lovely Cara trying out the Ferrari!

 Friends for life! xxx

Laughter Therapy!

Me and my wheels!

 

I think the pictures show we had a lot of fun! Arthritis is painful, debilitating and depressing but if you let it run your life you miss out on so much. I see the chair as a positive thing, I get to meet friends, get out and about. It is Just a mode of transport. If people can only see the disability and the wheelchair it's their problem not mine!

 

I've spoken to a number of people on various forums about having children and not being able to do things with them anymore. My personal experience is you have to adapt. We do lots of crafty things at the table....baking, decorating cakes, drawing, painting. We play catch...I sit down the kids do the running around. They build castles and dens with blankets and cushions and I make up stories to tell them. Am I a fun mum? Yes I hope so. Am I am mum that can go off to the park, play football and do lots of active things.....No, but my kids don't miss out on mum time.

 

My actual birthday we were home for. I had previously booked tickets for everyone to see We're Going on a Bear Hunt at the Lyric Theatre. I used ALL my spoons and a few from the next couple of days. The London Underground is Hard Work! even with help from Paul I struggled BIG TIME. The theatre was ok, not too many stairs and plenty of leg room, which is what I need!

 As you can see we had a fab time.

We had to take everything slowly, but then that is another key. Taking things slowly and listening to your body.

 

So, now I am going back to work. I have been granted help from the Access to Work Scheme and will be going into the office 2 days a week by taxi. I am apprehensive, I've been off  so long it is like I am starting a new job with all the nerves and worries that go along with that. I'll be working from home the remaining 3 days a week. This is for the next 7-8 weeks until I go into hospital for my surgery. I've met a lovely lady called Michelle and we have become friends. Michelle is going in for her knee replacement on 10th September and we have exchanged numbers to keep intouch and keep each going through the pain and physio. I have noticed that I some friends have dropped off the radar. They don't call, or text anymore and when you bump into them they say "Oh I'll pop round for a cuppa and catch up", that never happens. But while some 'friends' drop out of you life, other friends appear and I am thankful for that. There are however loyal friends that keep in touch and visit from time to time. In fact it's not about the visiting but the occasional text, message, call or email just to say "hi" It is a 2 way street and I am as bad as the next person about picking up the phone....I am getting better at it though!

 

So today is Monday and I still have some spoons left which will be used up no doubt getting school uniform for the kids in Tesco this evening!

 

 

 

The Light at the End of the Tunnel Shines a Bit Brighter!

I didn't sleep a wink on Tuesday night. I was pinning ALL my hopes on my appointment the next day. I know Paul didn't sleep either. We were both worried that the answer was going to be no, or wait and see, or maybe we should try....

We were up and at 'em at 7am. The kids were fed, watered, washed, dressed and delivered to our friends house to play her kids. We set off for the M25 keeping our fingers crossed that it wasn't going to be the car park that it is renown for. I kept doing my breathing exercises to combat the nausea the tramadol causes when travelling in a car. We gave ourselves 2 hours to get the hospital. The M25 behaved itself and we got to the hospital in just over an hour...impressed! The only parking at the RNOH is for disabled blue badge holders. We found a parking space which couldn't be any further from where we needed to be! I got into the Ferrari and went to find a coffee to settle my nerves.

Coffee drunk, we headed to the outpatients department. The hospital is old and I feel like I am bein wheeled through time. There is a lot of UP!...steep slopes which Paul threatens to let go of me on to see me hurtling to the bottom! I know he was just trying to take my mind off things. On arrival I am sent off for x-rays. X-rays done we wait to see the consultant in the clinic. We chat to a lovely couple who as it turned out actually only live round the corner from us! We are called into the room. The consultant has been called away to an emergency so we see one of his team. This time it's not someone who looks like he has just left school so that's reassuring. He reads my notes, looks at my x-rays and all the MRI results from my previous hospital. My knees are examined...really gently I have to say, and his hands were warm! The doctor umms and arhhhs and my heart sinks, I'm trying desperately not to cry. I explain that if someone offered to cut my legs off above the knees and give me artificial legs I would take them up on the offer because I would be in a better position than I am now.

After more umming and arrhhing and looking again at my MRI results and the report from my last arthroscopic surgery in March he turned to us both and explained that a full knee replacement doesn't have a great success rate in the under 50's....I'm 32...33 next week. My heart sinks a bit further. But he is prepared to do a patella femoral replacement which is a partial knee replacement giving me a new knee cap and new top bit of knee. He explains that this hopefully will buy me a bit of time until I am a more suitable candidate for a full knee replacement. The partial replacement lasts about 20 years which will make me 53 (eeeck!) I asked if I could have both done at the same time but it looks as though the right will be done first and if that's ok then the left will be done. If the right doesn't take then they will consider the full knee replacement. Doctor man informed that he needs to have a chat with Mr Carrington to get his final approval and that I should be getting my first new knee in about 3 months time. So! a great result all round. The news is a very welcomed birthday present and the knees will be a fantastic xmas present!!

I just wanted to share with you all a picture of me from Sunday all dressed up 1950's style for a Buddy Holly evening at our theatre. I got SO many compliments I felt great!

 My rock xxx

Vintage, Spoofs, Towers & Spoons!

I'm sat here in my cool front room with the windows open, a thunderstorm rumbling along in the background, the children playing in a makeshift castle they have made with cushions and blankets and thinking about the last couple of weeks. I've got the end of my first full week of not working, not logging on checking my work email and not attending any meetings via telephone conference. It has been pleasant but is not something I could do full time. Don't get me wrong, I love my family and I love spending time with them but this is about being useful and being able to provide for the children we chose to bring into the world. Work is looking at options for me and I have filled in the forms for help from the Access to Work Scheme. My boss has been in contact and advised that he is keen to get me back to work and that he is more concerned with options at the moment rather than cost. This makes me feel a valued member of the team. I do truly enjoy my job so I am very lucky in that respect. I know that many people do not have this support from their employers and have had to give up work due to their arthritis are reliant on the over stretched benefits system and the red tape they have to get through. This is where schemes such as the Access to Work Scheme come into their own offering help, advice and grants. Charities like Arthritis Care and Arthritis Research UK offer a wonderful source of advice and support. They also have support groups on social media sites like Facebook which can reach out to vulnerable and isolated people.

I posted my blog on a page on Facebook only to get a comment asking if the blog is s spoof blog! I'm not quite sure what the person meant and a few of my friends have suggested a number of translations which actually made me feel quite insulted. The person who made the comment chose not to elaborate on their comment so I am non the wiser. My personal opinion is that you don't have to read it if you don't want to, it's personal choice.  I know I have made quite a few entries on my blog so people may not have read the first entry. I started blogging to help me with the changes and challenges my osteoarthritis is presenting to me. Its a way for me to get all the thoughts and feelings out of my head without having to constantly bombard and unload onto the people I love the most. If the blog can help people also going through similar experiences to mine, showing that they are not alone, that they perhaps can identify with what is happening to me then that can only be a good thing.

I love vintage clothing of the 1940's and 1950's. I love the music of the era too. Now true vintage clothing is rather expensive so I buy vintage style! My mum bought me a lovely 1950's style dress for my birthday (which is in 2 weeks so it's an early birthday present) I have bought a petticoat to go under it to give it a full look. Here is the dress (without petticoat) and a picture of me and my gorgeous hubby on our night out with some friends at the local Chinese. I even got to wear the beautiful pendant Paul made me.

 

We, like many other people shop at Tesco and collect Clubcard vouchers. We exchanged some vouchers for Days Out Vouchers and eating Out Vouchers for Ask. We ended up with £60 worth of vouchers which thought would cover the entrance for the Tower of London plus £40 worth of Ask vouchers to treat the kids for dinner after our trip to the Tower. When we got to the ticket desk we were informed that we couldn't get a family ticket using clubcard vouchers. This in fact worked in our favour! The twins are 4 years old so got free admission as under 5's. I was eligible for a concession and showed my Blue Badge and certificate of entitlement to DLA as my proof and Paul was given FREE entrance as my carer!! So all we had to pay was £26 for myself and Harry. What a result! You don't get change on the vouchers but that's not a problem. We still have £30 worth of Days Out Vouchers so will be going to the Zoo, we have exchanged some more clubcard vouchers to cover the cost! My recommendation to those who are registered disabled or have a blue badge, read the small print. You may be able to get a concession ticket and get your partner or friend in for free or a reduced price as your carer!

 

I didn't take the Ferrari to the Tower of London. I used my sticks which enabled me to get around parts that I couldn't with the chair but I was very slow and in a lot of pain. I had lots of sit down breaks and got to people watch...which if you have never done it, it is a fun and interesting pass time, I recommend it! Everyone should spend some time sitting back and observing the world.

 this is me and my gorgeous girlie xxx

 

We stayed at the Tower for about 4 or 5 hours before heading over to Ask Italian for a very late lunch and to use  our £40 vouchers!

 

I'm not sure if some of you are aware of the Spoon Theory... Have a read http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

It is an excellent way of explaining to those that don't understand about living with a disability or illness. The lady who wrote it has Lupus but it can be applied to those with Arthritis or any invisible illness. I use it!

 

Now our trip to the tower has used up all my spoons for that day and I borrowed spoons from the next two days! Consequently I have been in a lot of pain where the pain meds don't really take the edge of it. It is SO frustrating that to enjoy ourselves with our families the arthritis makes us pay big time afterwards. I can guarantee that I will have some 'interesting' dreams thanks to Mr Tramadol and Mrs Cocodamol but this is the price I pay for making the summer holidays memorable for the kids.

 

The 1st August marked Lammas which is the Pagan festival celebrating the first cut of the harvest. Paul and the kids made bread.

We ate lunch and dinner in the garden which was lovely. Sadly today is a wet day so we won't be enjoying the garden today.

 

I made a cake last week for the family. I called it "I love My Family" it got devoured!

 

This Sunday Paul and I are going to the Queens Theatre in Hornchurch to see a Buddy Holly tribute act...I can't wait!! I have another 1950's style dress to wear and Paul is going to wear his suit and trilby hat! I don't know about anyone else but I HAVE to have something to look forward to, to get me through the bad and painful days. We have had these tickets for a couple of months now and it's a pre-birthday treat! The Queens Theatre is accessible for disabled people so I know I don't have to worry about getting in there and moving around the place. The staff are also wonderful and helpful.

 

Wednesday next week is my appointment at the Royal National Orthopaedic Hospital at Stanmore. I suppose I am pinning all my hopes on this appointment and the skills of the surgeon. I am hoping he can do the replacement surgery I desperately need. I am not naïve I know what the surgeries entail but I NEED to be able to move around without a wheelchair and crutches. The Ferrari is nice as far as wheelchairs go but I long to be able to walk with my children and hold their hands before they grow up and don't want to hold their mama's hand. I want to walk hand in hand with my hubby like other couples do that are in love. Fingers crossed I will be able to do this in the not too distant future.

 

I was reading a post on a social network page about husbands/partners and family not being understanding of the challenges and the pain people go through. I am SO lucky with Paul. He literally does everything for me and he doesn't complain. He tells me everyday that he loves me, he holds me gently when I cry because of the pain, he let me vent and shout with the frustration of not being able to do simple tings that others take for granted and he doesn't take it personally. He is wonderful and if I could clone him so others could have someone in their lives that is loving and understanding I would. Does Paul read my blog? No, he says he doesn't need to because he lives this with me and he knows I tell him everything. Would I like him to read it?...maybe, but only so he can read how much he means to me. Infact, I'm going to tell him right now...again

 

xxxx