The following extracts are just a few of the comments which were published Hot News, issue 102. If you find that it has an adverse affect on your Raynaud’s please write and tell us. The more letters/emails we have the more chance we have of making a difference. Write to Head Office or email:
In the last few years air conditioning in public places has become unbearable for people with Raynaud’s. Attending meetings, eating in restaurants, visiting cinemas and worst of all shopping in supermarkets has become a nightmare. One only has to step into the frozen food section, even with gloves on and their hands go numb with cold. The pain is so intense from the cold air flowing around that most people’s food shopping is now minimised, as they simply can’t cope. The fact that the cold affects the fingers so dramatically means that it is almost impossible to open a purse and handle money or deal with credit cards. Why do we have to have this constant flow of chilly air everywhere? It is expensive to run and uses energy which the planet could well do without. One used to go indoors in the winter to central heating but now it is climate control which is colder than the air outside! Understandably not everyone wants to be warm but in the UK's climate it is not as if we need to go indoors to cool down! Surely there could be a happy medium but nobody seems to listen or care.
This past year, in particular, I have found supermarkets a ‘nightmare’ and I cannot spend time browsing in greengrocery and delicatessen departments etc. As soon as I reach the shop, I put my gloves on but it is a problem choosing individual fruit etc. so the gloves have to come off! If for any reason I have forgotten the glove procedure, by the time I reach the check-out my fingers are so dead, it is difficult putting in my pin number.
I find air conditioning a curse and I have great difficulty at work, in shops, cars and restaurants. I manage to keep the office at a reasonable temperature by having two electric heaters (not allowed on health and safety grounds and frequently confiscated!). I have put cardboard over the air-conditioning unit (so far this has not been noticed). However, I have difficulty with the temperature when attending meetings. I have often had to leave meetings early because of the perishing cold - why do we need air conditioning all year round? As it is apparently woeful for the environment, at least my carbon footprint is reducing. Perhaps we could campaign to have it moderated in public buildings?
I have Sjögren’s Syndrome as well as Raynaud’s and only have to walk into an air conditioned building and I begin to choke. The cold also hits my forehead and creates pain. Only on a very hot day will I let my husband put climate control on in the car. Recently I went to the surgery for blood tests. The nurse told me to come back another day when my body was warmer as she was having difficulty taking my blood. This was because the waiting room where I had been sitting was freezing cold due to air conditioning. I also find that air conditioning makes my eyes dry out.
Air conditioning seems to be getting colder, or is it just me? I have to push my disabled wife in her wheelchair so I can't put my hands in my pockets. I am too embarrassed to wear full gloves during the summer, but I do wear fingerless cycling gloves when pushing the wheelchair because my hands get very sore. Most times there are air-conditioning vents near the tills so I turn progressively bluer when in a long queue because I can't leave my wife. On occasion I have left shops, without buying what I wanted, when I have got too cold. I am sure that many other Raynaud's sufferers experience the same as me.
I am writing to support your aim of getting air conditioning standardised. I suffer from Raynaud’s, which not only effects my hands and feet but also my nose and ears. For years now I have been constantly complaining about how my Raynaud’s is severely affected by air conditioning and (or) climate control. All public places, restaurants, shops and particularly supermarkets effect me. It becomes unbearable to shop in supermarkets as I am in pain around the fridges and freezers. Such coldness causes me to have a Raynaud’s attack so by the time I get to the check-outs I can barely work my fingers to open my bag/purse etc. I have to constantly move seats in cafes or restaurants which results in engaging glares from onlookers and staff asking what the problem is. This causes me embarrassment as to the untrained eye I appear a healthy 37 year old.
I have had a very painful experience on the subject of air conditioning. I had a blocked artery in my left leg and had a diagnostic arteriogram in the X-ray department. In my flimsy gown I waited for an hour outside covered with two blankets. My feet were white. Once inside, there was air-conditioning. I had to stay completely still for one and a half hours. My feet were extremely painful, more painful than my hands. It was cool for the staff. Seven weeks later I had an arterioplasty to go through the blood clot that occluded the artery. This time I brought with me warm bags for my feet and my hands. My hands were all right this time, but I had to stay very still again and could not move my feet around the warm bags. My feet were white and extremely painful. I became distressed. After nearly two hours I was taken outside. The Sister was instructed to apply pressure on my femoral artery for an hour to prevent bleeding. Unable to stay still while she pressed down on my groin with her fists, I apologised to her. She could see my white feet and felt sorry for me. Eventually I returned to the ward where I had a haemorrhage. I believe that there should be closer co-operation between the vascular team and the rheumatologists, but more often than not they are in different hospitals.
Air conditioning makes me feel ill, I not only feel cold but I also have coughing fits. Air conditioning is not only an issue of supermarkets but also of the work place. I was temping two years ago and worked in an open office where I had to put up with it because most of the other people where happy with the settings of the air conditioning. It seems to me that they could have decreased the settings for the air conditioning somewhere it the middle for healthy people and Raynaud's sufferers. I have also heard some healthy people telling me that air conditioning makes them feel uncomfortable and even under the weather. In summer, I have to carry a cardigan with me just to buy anything in the supermarkets. For example, my husband has to go to the milk and cheese section because I cannot be there, I start coughing immediately. I wonder if better allocation of the refrigeration systems in the stores will help to reduce the cold in those areas where refrigeration is used to display the food.