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.