Monday, 30 April 2012

Turn up the heat!

Well, the rain seems it will never stop, every time you look out the window the sky is leaking.

Now, anyone who has arthritis will tell you cold, rain and arthritis just do not mix. My hips are so painful and I am pill popping to try and get some relief. A warm house and lovely warm food go a long way to make life more bearable.

We have a wood burner and an open fire which heat the lounge and kitchen which works to a point but the open fire is difficult to keep alight and smokes badly. We have managed, but things took a turn when our son in law came back from his late grandmother's house and offered us her wood burner to replace the open fire. We jumped at the offer and when it arrived we could see it is very solid. The burner is 150 years old and really heavy. We are cleaning it up and arranging for installation. Our son in law said that it took three of them to lift the wood burner and that was after taking out the bits and pieces that are loose inside.  It isn't what some people would call 'pretty' but perhaps I am from the generation that feels as long as it is functional then that is fine!

For us the weather is stopping us getting out in the garden and sorting out the planting. With me, the problem is the wheelchair won't roll over the soggy grass and when it is in position it sinks into the mud. I don't like my husband getting out in the rain, for a period of time anyway, as I can't risk him getting ill. That is for his sake as well as mine. We have seedlings to go out as well as stuff we have kept over the winter. We do have some herbs in pots and are using those for herb salads as well as in cooking but they will need to be replanted soon too. Planting and growing your own produce also saves money, something we are all trying to do nowadays.

We need to get some vegetables planted out very soon or they won't be ready when we need them. Even though we have a small garden we can grow potatoes, beans, onions, lettuce, rhubarb, tomatoes and anything else we can fit i, as well as the herbs. Pots are a brilliant way of growing salads, herbs and tomatoes. I have seen ingenious methods of utilising space and am keen to try them out. Some materials are close to hand or by recycling which of course is encouraged.

I have looked into getting plants, both floral and vegetables, and am in favour of sharing plants between friends and neighbours. We have furnished our gardens many times by cuttings from other people and have given them cuttings in return. Car boot sales are another good place to get plants as many people take cuttings, plants and seeds to sell alongside other goods. We have been lucky enough to grow some plants from seeds or pips in vegetables and fruits we have eaten. It doesn't always work but unless you try!

I am especially keen to get children involved in gardening. Our daughters were always involved in gardening and they were so proud when they saw things they grew on the dinner table. Our grandchildren now show an interest in what is grown. So many children have no idea where food comes from, except the supermarket. I feel they are more likely to eat food they have been involved in producing.

There is nothing more satisfying as planting a seed and watching it grow into something you can pick and incorporate into a meal. In this day and age when people are so busy and use prepackaged goods it is no wonder children are ignorant of where their food originates. I admit that there are times when I am lazy and use a packet or tin  but I try very hard to use fresh food and try to eliminate preservatives and colourings.

People who have illnesses like rheumatoid arthritis and other auto immune diseases react to certain foods and it is imperative to try and keep triggers to a minimum. If I make dishes from scratch, using fresh foods, I feel I am doing my best in reducing the risk of triggering a flare of the arthritis. I know what is in the meal and can monitor much more easily the foods that may trigger a flare.

So come on weather brighten up so we can get out in the garden and make the best use of the space we have available.

Wednesday, 18 April 2012

Taking things for granted - life is a gift

We are given life and for most people how they deal with it and live their lives is pretty much in their own hands. Others face life differently with more complex decisions to make or are made for them.

Because some people are dealt a different hand doesn't mean their lives are any less important or they have less to offer. Their contributions are vital not only to the quality of their lives but to many others as well. I know people who, despite a disability, have gone to university, have found employment and live very productive lives in the community and in their chosen careers. Being disabled should never restrict the ambitions of anyone, in fact they should be encouraged to aim as high as possible.

People who come to disability later in life have huge decisions and choices to make. Depending on the severity of their disability carrying on in employment is the largest decision they have to make. If not being able to continue in their current employment there is the possibility of changing careers with assistance and guidance from advisors and family. Workplaces make adaptations and try as much as possible to enable everyone to be as productive as possible whilst using their skills as part of the workforce.

At home I try very hard to take an active part in running the home, with the help of my husband. Whilst having chores that I can manage there are others that I find difficult and some totally impossible. This is the same in workplaces as everyone has their talents, skills and abilities.

I can chop vegetables and fruit after my husband peels them, I make bread with a bread maker and pastry using a food mixer. I make cakes to the point of asking my husband to pour the mixture in to the tin and put it in the oven. Meals we make together sharing the tasks but I have played a part. I use adaptations to make my part as productive as his. When following recipes I take the lead as explain what is needed and how it should be done so I can take a 'managerial' role.

However, I have to let him sweep the floor and wash it, he hoovers the carpets, does the washing and washing up, cleans the bathroom and the kitchen. I go shopping making a list with him but he sorts out the money as I can't do that. He does the gardening but is getting my gardening equipment sorted out - slowly.

If you aren't disabled think about the things you do everyday. How easy is it for you to sweep the floor and pick up the dust? Can you push that broom and get down to pick up what you have swept up? Can you lift a bucket of water, then mop the floor and lift that bucket to empty it? Can you get out the hoover, move furniture to clean the carpets and then empty the bag? How do you manage in collecting the washing, putting it in the machine, taking it out and hanging it out to dry? Clean the bathroom and the kitchen? Do the gardening? For you perhaps these are not a challenge but if it were different for you how would you cope?

If you couldn't see what was on the floor to sweep or hoover, how would you feel? Could you tell where you dropped that glass could you tell where all the pieces were to clean up? If you were deaf how would you feel not hearing the running water into the bowl or bucket? If you were wheelchair bound how would it be not being able to feel the broom or mop handle? Not being able to lift that bucket or hang out the clothes? What would it be like not to be able to move the furniture and clean the carpets properly? How does it feel not to be able to dust the surfaces or get rid of the cobwebs? Would you be happy not to peel vegetables, make a cake, cook a meal, make a pot of tea? Could you really be happy not contributing to family life or take care of yourself? Would you feel a valuable member of society if you couldn't work, participate in social or leisure activities or provide for your family?

Everything is taken for granted but for people who cannot see themselves as fully paid up members of society because their disability stops them from being useful contributors it is extremely hard. Society marks them as scroungers and cheats. People who 'play' on the pain, discomfort, disease or illness they are suffering. Suffering is the right word because to be in the position where you cannot do basic everyday chores makes you suffer under the onslaught of abuse and ridicule of people who have no idea what you are going through.

There are dedicated people who spend valuable time helping disabled people come to terms with their disability and the problems that come with it, not least of all what is perceived as the stigma foisted on them by ignorant individuals. Professionals also help with the depression that can come with aquiring a disability later in life. This is due in best part to having to change professions or give up work totally. Those who have families to provide for are hardest hit as the threat of losing homes looms high if mortgages cannot be met.

I can empathise with this group of people as I was late to disability. I had worked and had a very active life. Depression is very high amongst disabled people and I was no exception. Add to that guilt and frustration life becomes very difficult. Suicide is high amongst disabled people who come late to disability. They find change almost impossible and for a great part feel isolated.

Deafness in later life is unbearable my father told me. He had poor eyesight all his life due to him being an albino but he also had hearing problems especially in later life. He had a hearing aid but didn't like it as he was unable to cope with the sudden, to him, noises of town centre life. His eye problems meant he wasn't a great reader and had found school work troublesome as a child. The television gave him all the information he felt he needed regarding the news but the sound was so high I am sure all the neighbours could hear it too.

As my father worked from the day he left school until he had his stroke the very thought of not being able to work was extremely difficult for him to accept. Being paralysed upset him greatly and at first he refused to accept that he would never walk again; this I believe made him give up.

His story is just one of many similar ones that arise every day. I have spent a few years refusing to accept changes but I must and so this blog was born. I want to share my life with Fred but I also want those who are not disabled to see what life on the other side of the fence is like.

There are degrees of disability but the areas of sensual disability - sight, hearing, feeling, decision making - are the toughest areas to come to terms with. When you go out clubbing are listen to the music, lift that pint, decide what money you are handing over or chose from a menu, look at your loved ones' faces, lift your child, kneel on the floor or run for the bus, remember there are people who will never get the chance to do some of those things.

So, never take anything for granted accept that what you have is a gift of life so live it to the full and don't waste it.

Monday, 16 April 2012

Can I? Can't I? Taking risks and chancing rejection.

The last few days have been very challenging. Rheumatoid Arthritis flares are painful, tiring and depressing. Add to that the horrid weather and I feel ready to give up. Then once the pain and tiredness start to reduce I feel different and I have started to take an interest in things again.

Today's post brought the latest issue of my Christian magazine that I subscribe to. I am happy to admit I take a religious magazine and I find it covers all the areas that I have interest in. This month gives a menu to feed a family of four for just £3.25 and advice on using the skills you have to possibly start your own business or help those in need.

When I had to give up work following my third stroke I found I was struggling with concentration, co-ordination, memory and confidence. I thought long and hard about what I could do with my life post stroke but knew I would have to work at reclaiming at least part of what I once had. I never expected to be the person I was before and that has been proven to be true, I am me but a different me. I learnt to adapt to life with a wheelchair instead of legs and being reliant on other people but I wanted to be independent and find what I had inside me. I knew I liked to write and to research so I signed up to an online journalism course. I loved it! I carried on with the course even after I moved to France and was able to put a bit of a twist to the course with the French influence. As I worked my way through the course I felt I was gaining in confidence and I was concentrating better. I had to work really hard at it but I was getting so much out of it and when my diploma arrived I was ecstatic!

I wasn't sure what to do with what I had achieved but I carried on writing bits and pieces like stories for my grandchildren. Then I got the opportunity to write for an English newspaper in France and I did that for quite a while. The first time I saw my name in print was fantastic as I had come such a long way. Then I wrote for the internet and that was very interesting as I could write about different things. But when I was diagnosed, eventually, with rheumatoid arthritis not only did a lot of things that I had noticed such as the pain, swelling, tiredness and depression, fall into place but I found I couldn't write so regularly and eventually I had to stop. This has been hard to accept as I had fought back after my stroke and now I was being stopped from doing something I really enjoyed.

Now I wonder if the treatment I am receiving has got me to a point where I can start again? My ten year old granddaughter has commissioned a story which I have started and she is insisting on reading every chapter. I have a few stories for adults in my collection but am not sure about actually doing anything with them. My daughters tell me send them off to magazines but perhaps it is the fear of rejection that stops me. I am continually having ideas and scribbling and as they say I will never know if they just sit there.

I suppose we are all afraid of rejection at various points in our lives. From making friends, to applying for jobs we baulk at putting ourselves in the position where we are 'not what we are looking for.' But if we give up at the first hurdle we will never finish the race so I have promised myself I will submit my stories to magazines and if I am rejected I will pick myself up, dust myself off and try again.

Thursday, 12 April 2012

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!

Wednesday, 11 April 2012

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?

Tuesday, 10 April 2012

I am disabled not stupid

Why is that some people associate a wheelchair with what my grand would have called,'lacking'?

I have had my share of the 'does she take sugar?' mentality but the worst culprits seem to be those you would consider as having a certain degree of intellect. Obviously, from the people I have come across, I was wrong.

We recently went to a well known restaurant here in France. I was pleased to see that there was a ramp outside for me to access the building using my wheelchair and I was greeted with a smile. The table we were given had room for the chair and all was well until I wanted to use the WC. The space between the row of tables where we were seated and a raised platform with other tables was so narrow everyone on the lower tables had to move so I could get past in the wheelchair. The toilets were generously sized but there were two sinks in the main area which were level with my shoulders and I am in a normal sized wheelchair supplied by the French version of the NHS. It was ridiculous. Who on earth designed and built this building? Certainly not someone who uses a wheelchair.

I had to attend a hospital appointment in Dijon which is a good hour and a half from us so we decided to do some household shopping while we were there. The supermarket is situated downstairs in a mall and we parked where we always park in the disabled spaces then take the lift down to the supermarket. We don't often use this one as we have found in the past they don't have trollies that attach to the wheelchair. As we only wanted a few items I was prepared to carry the items on my lap. As we neared the supermarket I was amazed to see a battery scooter with a large basket on the front and pointed this out to my husband. I asked the man at the desk for a trolley that attached to the chair. He replied that I could use the scooter. No, that is for people with reduced mobility not for someone who has to use a wheelchair. So they had to send someone to a place inside the supermarket to get the said trolley. Meanwhile I was asked for identification. Why? Because it isn't a normal trolley. Do you ask other people who are not in wheelchairs for identification? No because they use normal trollies. This is pure discrimination. A male non disabled customer said he would be insulted if he was asked for identification on the basis he was in a wheelchair. A man came down from the office to speak to me and the reason they gave for demanding identification from wheelchair users who use this 'special' trolley is because they only have one and I or other disabled people would leave it in the car park and the store would have to retrieve it!

Now, outside the store 'normal' trollies are left all over the place and not returned to the trolley park. Surely these have to be collected? But to me it is the fact that they are discriminating against disabled people because they can't be bothered to supply more trollies to fit on wheelchairs. The other factor is what are they doing with the identification? I am not at all happy about handing over my driving license or other piece of identity, them keeping it and they could take that information and use it without my permission.

I explained that we use four other supermarkets who have trollies to fit on my wheelchair and all they do is ask that we return the trolley to the desk: except one that has six trollies and these are left outside the store where we happily return the one we use. Today one of these stores did ask if I could supply identification but I said you have never asked before so the lady just let us use it. Of course it was returned to them. Except for the store with six trollies the others all have the type doesn't properly fit a standard French NHS wheelchair and keep detaching themselves another problem to tackle!

Surely the directors of these stores could come up with some way of treating disabled people in a dignified and empathetic manner. Disabled people do not really want special treatment just to be treated like everyone else. Saying that I find in France I have to stand up for my rights as the state and commerce leave me with no other options.

A woman parked her car lengthways behind our car which was in a disabled parking bay. We had no way of getting out and we were prepared to scrape her car if necessary to get out but she returned saying she was only going to be in the shop over the road for a few minutes. No you are going to move that car now, I told her. She backed up a bit and we came out and we reversed so she had to keep on reversing too, much to her annoyance, because we needed to go down a road on the other side. She then put her car back in the same place so no other disabled person could park there.

In another supermarket the disabled toilet is kept locked and you have to ask for the key, this is only found out when you get there to use it.

A large shop near us has a disabled checkout and a 'normal checkout' but the disabled one is kept shut (even at Christmas when the shop is busy.) So, as the wheelchair is too wide for the checkout I have to wheel round, open the barrier to the disabled checkout, go around to the other checkout and struggle to pay the cashier. It is on the orders of the management apparently.

At another store there are two disabled checkouts but one is the size of a normal checkout and as it is signposted as a disabled checkout you only find out when you get there and get stuck in the checkout! The problem is the checkouts are all standard except for perhaps one or at the most two checkouts for disabled, expectant mothers and usually less than 10 items. As expectant mothers and people with less than 10 items can use other checkouts I assert my rights as I have no other choice, as I told a woman the other day. The checkout next to use was empty but she wanted to use the less than 10 items checkout.???? I told her she could use the other checkout as she at least had the choice, unlike me. But she insisted she should use this one as it was for 10 items or less; even though the other desk was free!

The local phone company shop which we have had to visit on occasions has a flight of steps up to it. As my husband wants me to speak to them as no one there speaks English two men have to come and lift the chair with me in it up the steps; something I am not happy about. Surely there is something about health and safety? This is a common occurance as doctors' surgeries often have steps up to them and our pharmacy is the same.

When faced with me in a chair people will talk to my husband, who then tells them to talk to me as it is me who is inconvenienced. They act like I am a complete idiot and try and fob me off but I think they expect me to be like the French disabled who don't stand up for their rights. I will argue the point and not be patted on the head and told there is nothing they can do it is just how it is.

When I see the way huge superstores treat their customers I am shocked and livid. More than once I have said 'obviously you don't want my money. Isn't it as good as anyone elses?' Of course they want my money they just won't make it easy for me to use the shop!

The reasons, excuses and lies they trot out are complete rubbish. I told the man the other day that I fight against my disability every day why should I have to fight to do my shopping? It is a natural thing to do like going to a doctor or a pharmacy. Everyone should have the right to go out for a meal, go to the cinema, go to a concert, go to a café or visit a tourist attraction. But the so called management, who invariably have never had to deal with life the way disabled people do, couldn't manage a drinking contest in a brewery.

Monday, 9 April 2012

Pushing myself to the limit and hitting the brick wall

I feel very guilty about not being able to do very much in the home and this means leaving things like hoovering, cleaning, sweeping and the laundry to my husband.

I think the family look on me as being lazy but they say that is not so. I believe them - it is me, I just have huge guilt feelings.

I have spent the last couple of weeks pushing myself to my limit and three days ago I hit the wall. I can prepare meals with my husband's assistance. When making pastry I have to use the food processor as I sadly can no longer mix the flour and fats by hand. I have started making my own bread as I have more confidence in the contents but I now use a bread making machine.

More and more I am making my own dishes from casseroles and curries to bread and cakes. I make biscuits, quiches, pies and tarts. Some days we just make a Thai pot luck meal. This is one of our favourites as Thai curry paste has a lovely taste especially when added to vegetables, Thai soup mix and Satay.

Tajine is another favourite as it has lots of spices that I adore. We actually bought a Tajine dish which we use a great deal. Chicken is a major part of the recipe added to vegetables with added spices.

Cooking is something I feel I can do although I have to ask for some help which for me is extremely hard as I look on asking for help as a sign of weakness and it is very hard to change my mind set. Asking for help to do the hoovering, cleaning and laundry sounds like saying do this, do that - i.e. giving orders. The family say they don't mind helping around the house or doing shopping I just wish I could do it all myself.

Recently my husband read The Spoon Theory. He told me that it is what he has been telling me for years, pace myself. He has said that I should do a little then rest but I want to do it all and then of course I suffer.

After feeling I have done so well over the last couple of weeks and accomplishing so much then hitting a brick wall I see that I have to change my mindset and my ways. I will do some chores or cooking for a couple of hours and then rest. I have promised I will ask for help and not expect people to read my mind and know when I need help.

I am not saying that it will work immediately but I think we will get there.