Responsibility - a job for life

What we learn at the knee, stays with us for life.

This homily I find to be very true and it was so for me. My father was somewhat of a workaholic and as a child he hardly seemed to be around. He had a day job, several, over the years, and he worked in the evenings too, to supplement the family income. My mother returned to work after the birth of both me and my brother so effectively my grandmother raised us.

Neither of my parents could see the point of me having much of an education with me being a girl, whatever career I had in mind. Learn to read, write and add up was all that was important, then leave school and get a job; any job.

The ethic of work is a good one but surely there is more to it than that. In my working life I had jobs that I hated and ones that interested me, up to a point. But never did I get a job that truly fulfilled me. I suppose the job that I liked the most was working in a shop as I am somewhat of a people person and it taught me a great deal. Dealing with the public suited me. I enjoyed the interaction with people, getting to know regulars and being a friendly face to the elderly as you were possibly the only person they spoke to all day.

Of course this wasn't the job I aspired to but being denied the encouragement and opportunity to further my education I had little choice. My school, in those days, didn't encourage it's girls to follow their dreams. If you were not in the top class you were destined for  shop work, a minor office job or a factory. The problem being, you began to believe you were not suited to anything else. Unless you had the support and role model of a parent who had 'bettered themselves' you saw what you were told was your place in society.

It was later that I realised I could have had different choices but these had been unknown to me at the time and no one advised me differently. By then I was married and had two young children. Money was tight and time too. It is easy to look back and think of what might have been but that doesn't do you or anyone else any good.

I would encourage parents to be good role models for their children in all aspects of their lives and set a good work ethic for them. In the present climate it isn't easy, unemployment is high as is redundancy. In that position there is still the opportunity to show that work is still a priority as is sourcing it. To show young people the resources available in finding that all important job is as vital as showing the ethics of going to work and earning money. We shouldn't forget the part that Saturday jobs and volunteering plays either. I encouraged my daughters to take up part jobs while at school and college and both became volunteers with the Guiding Association. Skills learnt at groups such as this are relevant to future employment and in life generally. My elder daughter found that out when she was in Norway as part of her teacher training programme. On an expedition she was the only one who could light a fire in the middle of a snowy forest with damp wood! Yes, as a Guide and then a Guide Leader she had the skill to get a fire going to heat water for a drink and to warm themselves. Also her involvement in the movement sat well on her University application form to start her teacher training.

But does the responsibility stop there?

Having the job is one thing but how you can manage on that pay you earn is another. Getting that pay packet or salary is exciting and a young person can become seduced by money in their pocket.

Parents can help their child set up a bank account and a budget, teach them to pay their way by explaining what needs to be paid for each month. Outgoings such as rent or mortgage, gas electricity, water, taxes, food, petrol or diesel and sundries such as savings and pensions are a priority of life. Children never think of cost, put your clothes in the linen basket dirty and get them back clean and ironed with no thought of what is involved. Electricity, water, washing powder all have to be paid for. On a cold, wet day to be snug and dry at home is idyllic but that central heating isn't free and neither is the house.

I got a shock when I had to start buying my own clothes! The cost of underwear, tights, tops, skirts, coats and most of all shoes was horrendous. Previously my mother had paid and that was it now suddenly I had to start choosing wisely. Food appeared on my plate as if by magic, I ate it with little or no thought about what it cost to put it there. When I started working in the delicatessen department of  a department store I began to realise the relevance of prices. I think it was when people asked for a quarter of this or that and the weight was a little over they said they couldn't afford that much. I began by thinking it was only a few pence but by listening I soon realised that those few pence added up over a week and had a great relevance on their choices of food, heat or accommodation.

When I married we were both working and between us we set a budget for the week. Menu planning was also high on the agenda so we shopped once a week at the supermarket for ease and stuck to the plan which in those days was easy to do as prices tended to stay stable and not change from week to week.

After our first daughter was born I vowed to shop more locally and got to know the local butcher, greengrocer and corner shop owner. We still did a bigger shop for things like washing powder and washing up liquid the heavier items but mostly our food items were fresh and local as I believed you got better value for money. I found the corner shop  to be especially useful and once a week I would buy bacon pieces (pieces left over from the bacon he sliced)  from him to make a bacon pudding or put in a casserole. My mother was horrified! I couldn't understand why as the bacon was meaty and had hardly any fat, I got a cheap meal and it saved me cutting it up. I thought I was being resourceful!

The principles of being adaptable rate highly and both parents and teachers have the responsibility of being the role models for future generations. Work isn't just 9 to 5 with a pay packet at the end; it is a life style. It means responsibility, encouragement, endurance, decision making, budgeting, negotiation, research, data collecting, making comparisions and putting in place the steps to build foundations for future generations to follow.

Parenthood is a gift and no one has the absolute right to become a parent, but if you do become a parent you take on the biggest job you could ever attain. I believe I was the luckiest woman alive to become a parent; twice. I took the gift I was given and vowed to nurture my children by giving them the best start in life I could with the tools they needed to make their way in life.

Responsibility doesn't end when a child becomes an adult as once they start on their own road in life the opportunities to continue the support and encouragement remain. You cannot relinquish your role in their lives as how you deal with the pressures of family life, work, job hunting, retirement and health worries has a deep impact on them. From a small child who you teach to budget their pocket money to an adult person you discuss mortgages and loans with, you are developping the potential of a responsible citizen.

Setting goals, but does Fred listen?

I have had to have stern words with Fred as I am going through a flare but he just doesn't want to listen. I have even tried to give the flare away but no takers so far.

I have been reading forums and blogs and seen posts about setting goals and racing to finish activities.

I feel setting goals is a good idea as it spurs everyone to achieve. However, it isn't that easy when you have a chronic illness. Many years ago I was introduced to 'pacing' but I have never been able to achieve it. Of course I have learnt the hard way and caused myself distress, pain and acute fatigue; not to mention what I have done to my family, especially my husband by not practising this technique.

Realistic goals are excellent as long as you stick to those goals and not try and overachieve. It would (and has been for me) easy to feel that having achieved the set goals you can push on to do a little more and a little bit more. Setting unrealistic goals mean that you will be rushing to finish and for anyone who has chronic pain, stiffness and tiredness it is the perfect way to set you back and stop further activity for a while.

So what are realistic goals?

For me it is being able to prepare meals, go shopping, visit friends, go on outings. Not overly exciting but for me they are what I want to do while others have different goals but the technique is the same.

If I want or need to go out I need to rest up the day before. Depending on where I have been and how long I have been out I might need to rest up the day after too. To go shopping I have to have a list and plan where I am going, so we have an route we will follow. If I am out too long I get so tired I find it difficult to communicate; this is a legacy of my three strokes. I have to have help with cooking and I turn to my husband or granddaughter to assist me. My husband never complains at chopping onions, garlic and chilli peppers, although I make him wash his hands thoroughly afterwards! My granddaughter makes superb pastry but if I need to do it whilst she is at school I use my food processor; saves time and eliminates pain. I make my own bread and I am so thankful for my bread maker, pop in the ingredients, switch on and let it get on with it. I feel some kitchen aids are a waste of money but my food processor, bread maker and juicer are worth the money.

I use a chair to sit on when I have to stir sauces or ingredients at the cooker and ask my husband to get things from cupboards, the fridge, freezer and cooker. Some people will say I am lazy but just these little changes to my life mean I can achieve goals something very important to people in my position. If I tire myself but being too independent it means I collapse in pain and feeling so tired and I will have to go to bed. I then cannot eat meals with my husband and put extra pressure on him and the rest of the family. This is most unfair to them, I like to watch television with my husband but if I overdo it then we watch the same programme in separate rooms.

To make life easier for my husband I have a medical bed which has a controller to raise the bed and the head to help me sit up. This helps him so he hasn't got to manually lift me. So the goals I set means that my husband isn't too tired and in pain to help me through the day and achieve what I want to do.

Even following these techniques doesn't mean that you can do everything you would like to do. Rheumatoid arthritis can go into remission but equally it can flare out of control. People live with varying degrees of rheumatoid arthritis and this has a bearing on what they can do.

There is no need to rush through chores or activities.
Take regular breaks.
Try to sit while doing household chores like food preparation, ironing, gardening and while attending to food on the cooker.
Use aids or adaptations to help with household chores, in the car, in the bathroom and if necessary in the bedroom.
Lose weight if necessary to avoid strain on joints and hopefully improve mobility.
Make sure you take the medication prescribed and discuss your medication with your rheumatologist if you feel things are not going well.
Make sure the goals you set are realistic.
Don't be afraid to ask for help.
Don't be afraid to accept offers of help.
Rheumatoid Arthritis is an autoimmune disease and affects organs as well as joints, report anything you feel is abnormal for you.

Having written this I now have to make sure I follow my own advice!

Should we fight or just go with the flow?

I have had it said to me and read that having rheumatoid arthritis means you are fighting every day.

To a certain extent that is true and it isn't easy being in pain, having stiffness and being so tired all the time. But fighting can be tiring too. The more energy you put into fighting takes away the energy you need just to get through the day.

The energy needed to just get out of bed is an enormous amount then washing or showering if, like me, you can't manage a bath. After that you have to use a bit more energy to get dressed even if you get help. Breakfast for me is porridge which gives me a long lasting energy boost and I eat this with natural yogurt followed by a herbal tea and then my tablets. I cannot rush any of this and need help from my husband to manage them. If I need to go shopping he has to stow the wheelchair in the car, find the shopping bags, draw up a shopping list and get me from the house into the car. By the time I get there and am settled I am exhausted. At our destination he has to find a place to park at our local supermarket as they have had the car park up for a few weeks now and if the two remaining disabled parking places have been taken then he has to park on an end of a row if possible so the chair will get down beside the car. Nothing is more frustrating for me is finding a non disabled driver parked in a disabled space when I am struggling to get into my car when there is insufficient room to get the car near it.

The real battle begins when we get into a shop; any shop. Invariably the aisle I need to get to is blocked by someone stacking the shelves and the wheelchair, with attached trolley, is too large to get by. Then there are the displays dotted around the stores ripe for a wheelchair and trolley to knock down. It is really stressful when you negotiate an aisle only to find you can't get out the other end as a display is parked in your way. And the pillars in the supermarkets near here are erected at the end of aisles too and I can honestly say that it is really, really painful when you have to struggle to negotiate around the pillar into an aisle and you catch the wheels and jar your back, neck and hips. Smaller shops are worse still they are so packed full of stock there is no room for a wheelchair user to get round. But it isn't just wheelchair users people using walkers, crutches and walking sticks are hampered by thoughtless shop keepers and management.

But should we fight to live daily? Or is it better to just look on it as a minor hiccup and laugh it off? I am of the opinion that we should fight for our rights and endeavour to get all shops disabled friendly. But of course this is tiring and a long, gruelling battle. If we just accept things cannot change or will not change then we are giving the impression that we not worth anything better.

When people say that things can't be that bad and really arthritis is just a pain and they get pains too, they are not understanding what people with chronic illnesses and diseases have to cope with all day, every day. Chronic illness is a daily battle to get through the 24 hours of every day and when you get to bed at night pain can and will keep you awake.

Being laid back and accepting whatever life throws at you is a wonderful concept but when you have a daily fight to just live wouldn't it be wonderful if the rest of the world made it just a little bit easier?

Sitting comfortably?

I had to give in to using a wheelchair a long time ago and we found that the cobbled streets and pedestrian areas here were not very wheelchair friendly.

A lovely medieval town near us has many cobbled areas and my husband has no option but to push the chair over them. The wheels get stuck between the cobbles, I nearly end up falling out and I tell him often he chooses to push me over them on purpose! Of course he pleads that is not true, uuumm! It is very uncomfortable too as the constant jigging about causes pain in my back. It isn't any better with a walking cane either as the end can also end up between the cobbles causing one to trip.

We took a trip to Dijon, the capitol of Burgundy, to see how user friendly it was. The answer is not very.

The main problem is dropped kerbs. The distinct lack of them is evident to people with wheelchairs and pushchairs. We actually found a road with dropped kerbs one side and not the other; very strange and obviously not thought through. Some kerbs are incredibly high and then having to either get the chair up them or down them is hindered by the cobbles; again.

We arrived at a disabled parking space one day to see an ambulance at a doctor's surgery. In France the ambulance system is quite unlike that of the UK. You can book an ambulance or ambulance car to take you to appointments. We watched as two ambulance people lifted an elderly man from the ambulance in a wheelchair and then had to lift the chair with the man in it up a flight of steps to the doctor's office. I am sorry to say that this is not a rare occurance.

We were looking for a bank. It was frustrating to find that so many banks do not have disabled access. It is not restricted to banks. Post offices are also in many instances inaccessible, the one in our nearest town is a point in question and I have to send my husband with a detailed list if I need anything from there or sent. The most annoying and frustrating place was the Tax office. We submit our tax form every year and we would go to the office to make sure the form was correctly completed. But it was a nightmare to get into and because the building was leased they couldn't add a slope or any other entrance. The inside is beautiful as it is a very old house which has been converted. The stone stairs have carvings and ornate bannisters. I, however, have to wait until someone is free to come and see me downstairs in front of everyone else.

Difficulty in access isn't restricted to public buildings. Restaurants are notorious for having bad access. On holiday one year in the Alsace we stopped at a restaurant where I asked if I could get into the restaurant. I was assured that there was no problem; the restaurant was upstairs but no lift! I have had very helpful restauranteurs who have made space for me but I have found it very hard too which does spoil an evening out.

Concert halls are just as problematic. I saw that a favourite band of mine was coming to a big arena near us. I tried to book seats as soon as we knew but they were not going to make it easy for me. I couldn't have the wheelchair as there was no room and I would have to sit on a chair. This is extremely uncomfortable for me but also I actually had to get to the seats in the chair and what would happen to the chair after I had transferred? I couldn't get to the refreshments in the interval and then I had to get out at the end; not at all satisfactory.

Access to shops and shopping is a bone of contention for me. Some shops are so cluttered with stock that there is no room to manoeuvre the chair. Invariably I end uptaking half the stock with me on the chair. There is no room to wheel between aisles due to end stands which protrude into the aisle.

Supermarkets with trollies that fit the chair are very few and far between which means me having a basket on my knees causing a great deal of pain and discomfort. And the checkout! Unlike the UK where all checkouts are the same size here in France the checkouts are all too narrow for the manual chair let alone an electric one. There are one or two checkouts wide enough for my chair but often they are marked for disabled people, ten items or under and for expectant mothers. If you ask if the person if front of you needs a designated disabled checkout they will say that they didn't realise it was a disabled one even if there is a huge great sign there! The checkout cashiers don't help as they will not tell people they can't use them and you arrive with a basket of shopping and they serve someone with a trolley load and give you an appologetic smile. I said to one that it was her job to serve just those deserving of using a designated checkout but she just shrugged.

I have said before that the disabled people themselves don't see this as serious. They just accept that things are the way they are. L'Association des Paralysés de France is set up to support and assist disabled people and their families. However they don't fight for these basic rights that we can access places the same as anyone else, do more that buy a few basic items at one time in a supermarket, go and enjoy a concert, access a restaurant or even submit a tax form. Disabled people are as entitled everyone else to live a normal life. I don't want to change the quaint, medieval towns and resurface them but dropped kerbs is not a great ask. I would like shops to rethink their displays to allow people, like me and you, to shop normally without hinderance. I am not asking for much just understanding and respect. I give people respect if they earn it but I cannot give respect to those who treat me as though my money isn't as good as anyone elses.

I had an experience in hospital that in many ways was quite encouraging. I was admitted with a herniated cervical disc and at first I had to stay in bed because the armchair they supplied was quite unsuitable. It had a low seat and back and couldn't support me. I asked if my husband could bring in my electric wheelchair and they agreed. The difference was amazing, I could get out of bed and sit in the chair giving me a different perspective on the view outside and the room. I was then transferred to a hospital near home to have what was called rest and recuperation. Again I asked for my electric chair and again they said yes. My husband placed it by the bed and I could easily transfer from the bed to the chair, no problem.

One day I was in bed when a lady came in to clean and I was astounded as she tried to lift the chair to clean around it! It won't move she cried. No, it is very heavy because it is electric and has a motor on the back! So she put her hand on the control and pressed the button whereby the chair shot forward into her. Luckily she wasn't hurt but she left the chair alone after that. Sometimes you just wonder where they find people!