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!
Thursday, 12 April 2012
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?
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.
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. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. 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.
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. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. 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.
Sunday, 18 March 2012
Medication and other options.
I feel very lucky that I have a good rheumotologist. He is French but speaks very good English so we rub along quite well. He has looked after me since I was diagnosed in summer 2008, it is only the rheumotologist who deals with my RA and prescribes medication. My GP is kept in the loop but he doesn't get involved.
Recently I had to see a neurosurgeon recently as I have a trapped nerve in my upper back and a herniated lumbar disc. It was the rheumotologist who had to refer me. Due to the trapped nerve I haven't been able to discontinue the prednisone steroids I have been taking. I am down to 6mg a day but just can't get off of them. I have been told it is the steroids that has caused the diabetes that I was diagnosed with last October so I am keen to get off of them. I have a scan tomorrow on the upper back/neck region to identify the exact disc involved and then I see the neurosurgeon again to discuss an operation. He has promised me that he will investigate the lumbar region when he has sorted out the trapped nerve. I certainly hope so as the herniated disc in the lumbar region is drastically impeding my mobility.
I really detest taking my RA medication, steroids have given me exaggerated muscles, diabetes, affected discs in my back and methetrexate was possibly involved in pneumonia I had twice. I seem to be prone to sinusitis and this then becomes chest infections. As many people with RA I have more than one auto immune disease and all cause me pain.
I decided to dig out my TENS machine and use that on pain affected areas and I find it very useful. My physiotherapist certainly approved. It is just the electronic waves and no drugs involved. I also use heat pads and cold pads depending on the areas involved.
I get a lot of pain in my hands and wrists so I purchased some fingerless support gloves and found these very effective. For the cold weather I wore them with some fingerless mittens. The ones that worked best came up to my elbows.
Last week we had some beautiful weather. It was warm and sunny and I certainly felt much better but today I am in pain again as it is cool, cloudy and rainy.It makes me depressed too when the weather is like this as I just cannot do much if anything. Last week I was, with my husband's help, actually doing things around the house and cooking. Unfortunately I have had to use my food processor more and more to make pastry as rubbing fats in by hand are just too painful. But it is a little price to pay if I can make meals myself. When I can manage to be a normal housewife it seems to help my pain as I am happier and contented. This I think is as much a relief for the RA as anything. I usually take morphine or paracetamol and codeine for pain but last week I hardly took any! Not so this week, I have needed to take morphine just to sleep.
I have investigated music therapy. I am a lover of music of many forms but especially like classical music, Celtic music and rock.
Apart from rock music I find music soothing to meditate to. However it depends on my mood what I listen to. I like nothing better than singing along to Queen in the car on the way to a hospital or doctor appointment. When I was having physiotherapy with my previous physiotherapist we would play Queen albums whilst he worked on my joints. A little elderly lady was in the waiting room when I came out and she looked horrified! The physio said she probably thought she would have to listen to Queen too while he manipulated her knee!! This evening I am having a wonderful time listening to a Celtic concert whilst typing. Music is used a lot in therapy and proved to be very successful too. It can make you laugh and make you cry. It can cheer you and depress you.
Many people would prefer to use non drug treatments but I understand that it is not totally feasible to just have that treatment, it is however helpful to use these alongside regular prescribed medication. I do not agree with people who say that they have a cure for RA by using non drug treatments and therapies. In fact they make me very angry as no cure has been found for RA and rheumatologists will tell patients they will have to take medication for ever.
One therapy I would like to indulge in is walking. I have the herniated lumbar disc, RA affected hips, knees, ankles and feet and am only able to walk very short distances and that is holding onto my husband's arm or my walker. Normally I use a wheelchair; I have both a manual and electric chair. But I am used to this now and for me to spend a day without pain would be amazing.
I have found that my medical people - doctors, physios and nurses are keen to promote non drug complimentary therapies as long as they are use in conjunction with RA drugs. We all have our favourite means of dealing with pain. For me the heat/cold therapy, music, compression gloves and TENS all work well; however, we all have to find what is best for us and cannot tell anyone else they will certainly benefit from works best for us.
Recently I had to see a neurosurgeon recently as I have a trapped nerve in my upper back and a herniated lumbar disc. It was the rheumotologist who had to refer me. Due to the trapped nerve I haven't been able to discontinue the prednisone steroids I have been taking. I am down to 6mg a day but just can't get off of them. I have been told it is the steroids that has caused the diabetes that I was diagnosed with last October so I am keen to get off of them. I have a scan tomorrow on the upper back/neck region to identify the exact disc involved and then I see the neurosurgeon again to discuss an operation. He has promised me that he will investigate the lumbar region when he has sorted out the trapped nerve. I certainly hope so as the herniated disc in the lumbar region is drastically impeding my mobility.
I really detest taking my RA medication, steroids have given me exaggerated muscles, diabetes, affected discs in my back and methetrexate was possibly involved in pneumonia I had twice. I seem to be prone to sinusitis and this then becomes chest infections. As many people with RA I have more than one auto immune disease and all cause me pain.
I decided to dig out my TENS machine and use that on pain affected areas and I find it very useful. My physiotherapist certainly approved. It is just the electronic waves and no drugs involved. I also use heat pads and cold pads depending on the areas involved.
I get a lot of pain in my hands and wrists so I purchased some fingerless support gloves and found these very effective. For the cold weather I wore them with some fingerless mittens. The ones that worked best came up to my elbows.
Last week we had some beautiful weather. It was warm and sunny and I certainly felt much better but today I am in pain again as it is cool, cloudy and rainy.It makes me depressed too when the weather is like this as I just cannot do much if anything. Last week I was, with my husband's help, actually doing things around the house and cooking. Unfortunately I have had to use my food processor more and more to make pastry as rubbing fats in by hand are just too painful. But it is a little price to pay if I can make meals myself. When I can manage to be a normal housewife it seems to help my pain as I am happier and contented. This I think is as much a relief for the RA as anything. I usually take morphine or paracetamol and codeine for pain but last week I hardly took any! Not so this week, I have needed to take morphine just to sleep.
I have investigated music therapy. I am a lover of music of many forms but especially like classical music, Celtic music and rock.
Apart from rock music I find music soothing to meditate to. However it depends on my mood what I listen to. I like nothing better than singing along to Queen in the car on the way to a hospital or doctor appointment. When I was having physiotherapy with my previous physiotherapist we would play Queen albums whilst he worked on my joints. A little elderly lady was in the waiting room when I came out and she looked horrified! The physio said she probably thought she would have to listen to Queen too while he manipulated her knee!! This evening I am having a wonderful time listening to a Celtic concert whilst typing. Music is used a lot in therapy and proved to be very successful too. It can make you laugh and make you cry. It can cheer you and depress you.
Many people would prefer to use non drug treatments but I understand that it is not totally feasible to just have that treatment, it is however helpful to use these alongside regular prescribed medication. I do not agree with people who say that they have a cure for RA by using non drug treatments and therapies. In fact they make me very angry as no cure has been found for RA and rheumatologists will tell patients they will have to take medication for ever.
One therapy I would like to indulge in is walking. I have the herniated lumbar disc, RA affected hips, knees, ankles and feet and am only able to walk very short distances and that is holding onto my husband's arm or my walker. Normally I use a wheelchair; I have both a manual and electric chair. But I am used to this now and for me to spend a day without pain would be amazing.
I have found that my medical people - doctors, physios and nurses are keen to promote non drug complimentary therapies as long as they are use in conjunction with RA drugs. We all have our favourite means of dealing with pain. For me the heat/cold therapy, music, compression gloves and TENS all work well; however, we all have to find what is best for us and cannot tell anyone else they will certainly benefit from works best for us.
Wednesday, 8 February 2012
Cold plus arthritis equals = pain
We, like everyone else, are experiencing extremely cold conditions. This has resulted in pain, stiffness and tiredness.
The temperatures have been down to minus 20 degrees at night and minus 10 degrees in the day. The mornings have left us without water and heating although until today they have come back on. Today we have no central heating and frozen pipes. Luckily we do have a wood burner and an open fire but this is insufficient to heat the upstairs where our daughter and her family live and they are desperately trying to get the pipes unfrozen. We telephoned several heating engineers but were running out of possibilities until one man took pity on us and is coming soon.
In an effort to keep warm we are drinking cups of tea and eating stews, casseroles and curries! Luckily these are all favourites of the families. We are all wearing layers too, which helps, but doesn't help to ease the pain. I have a thick pair of walking socks I bought many years ago when I was able to go hiking and these have been doing a sterling job.
The heating engineer has been and found a valve had been fitted wrongly. He has rectified the problem and now the heating has come on! Simple and effective.
My daughter is very pleased to have the heating back as she has been trying to potty train her little boy and he was not impressed to be doing so when he felt cold!
The temperatures have been down to minus 20 degrees at night and minus 10 degrees in the day. The mornings have left us without water and heating although until today they have come back on. Today we have no central heating and frozen pipes. Luckily we do have a wood burner and an open fire but this is insufficient to heat the upstairs where our daughter and her family live and they are desperately trying to get the pipes unfrozen. We telephoned several heating engineers but were running out of possibilities until one man took pity on us and is coming soon.
In an effort to keep warm we are drinking cups of tea and eating stews, casseroles and curries! Luckily these are all favourites of the families. We are all wearing layers too, which helps, but doesn't help to ease the pain. I have a thick pair of walking socks I bought many years ago when I was able to go hiking and these have been doing a sterling job.
The heating engineer has been and found a valve had been fitted wrongly. He has rectified the problem and now the heating has come on! Simple and effective.
My daughter is very pleased to have the heating back as she has been trying to potty train her little boy and he was not impressed to be doing so when he felt cold!
Saturday, 4 February 2012
2012 has not started well - understatement!
After a pretty rough 2011 I had hoped 2012 would be better; how stupid could I have been?
After suffering pain in my neck area again I suddenly found it was spreading down through my left shoulder to my elbow, wrist, hand and fingers. Then I started to go numb from my fingers up.
After a particularly difficult day my husband was helping me get ready for bed and the pain was so intense I almost passed out. He got me in the car and took me to hospital. I had a scan then was put on a drip with morphine, steroids and anti inflamtories. A doctor came to see me and said I had a trapped nerve in my neck which was the problem and I need to see a neuro-surgeon.
I was transferred to a hospital nearer home the next day and for ten days was treated with morphine, anti-inflamatories, fitted with a neck collar and had my arm immobilised with straps. I came home with the collar and immobiliser plus morphine and anti-inflamatory drugs.
I saw my rheumotologist a couple of days ago and he examined me then referred me to a neuro-surgeon. He explained that, although it isn't his field, the operation could help the pain from my shoulder to fingers and the numbness but I would still experience pain in my neck. He also said the operation was risky because of where the problem lies. I understand that I need to think about the operation as any operation is intrusive and has it's risks. I have used a wheelchair for around 11years now and am used to this but I do have functioning arms and hands. I can walk albeit slowly and painfully. Having said that I would like to be better than I am now but if I had to wait a very long time before an operation it would be dreadful as I don't want to become reliant on morphine or a neck collar. I am somewhat confused and worried about things.
I have an appointment with a neuro-surgeon 14th February which is quick. The ball has started to roll and I hope they can help me as even typing this is painful and the morphine makes it hard to concentrate and think.
After suffering pain in my neck area again I suddenly found it was spreading down through my left shoulder to my elbow, wrist, hand and fingers. Then I started to go numb from my fingers up.
After a particularly difficult day my husband was helping me get ready for bed and the pain was so intense I almost passed out. He got me in the car and took me to hospital. I had a scan then was put on a drip with morphine, steroids and anti inflamtories. A doctor came to see me and said I had a trapped nerve in my neck which was the problem and I need to see a neuro-surgeon.
I was transferred to a hospital nearer home the next day and for ten days was treated with morphine, anti-inflamatories, fitted with a neck collar and had my arm immobilised with straps. I came home with the collar and immobiliser plus morphine and anti-inflamatory drugs.
I saw my rheumotologist a couple of days ago and he examined me then referred me to a neuro-surgeon. He explained that, although it isn't his field, the operation could help the pain from my shoulder to fingers and the numbness but I would still experience pain in my neck. He also said the operation was risky because of where the problem lies. I understand that I need to think about the operation as any operation is intrusive and has it's risks. I have used a wheelchair for around 11years now and am used to this but I do have functioning arms and hands. I can walk albeit slowly and painfully. Having said that I would like to be better than I am now but if I had to wait a very long time before an operation it would be dreadful as I don't want to become reliant on morphine or a neck collar. I am somewhat confused and worried about things.
I have an appointment with a neuro-surgeon 14th February which is quick. The ball has started to roll and I hope they can help me as even typing this is painful and the morphine makes it hard to concentrate and think.
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