I am not sure how many people on the group are new to APS/Hughes Syndrome but i know there has been a number of booklets that have been written out there and i wanted to share a couple i found useful when i started looking for answer you have the wealth of information that HSF provides but there are some other booklets etc.. I am not saying these are the best i am just saying these were useful to me. If you have anymore let me know maybe we can look at have a libaray of other useful doc just an idea.
A patients Guide written by two people who have/had APS
The Antiphospholipid Syndrome
A " Letter To Family & Friends" to explain, APS/SLE/Fibro and it's effects on us
My illness is a difficult one to understand, even for me. Many of the problems it causes are invisible and difficult to anticipate. I need you to understand that my life always is subject to change because of the unpredictable nature of the illness with which I must live.
First, let me explain the depth of this illness-
- My joints and muscles are under constant attack and can be very sore and painful.
- My skin is very sensitive- sometimes to touch, to heat or cold, sometimes even just to sunlight.
- My vision, hearing, sense of smell, and sense of taste all can be affected.
- I may get a very dry mouth, have mouth ulcers, have very dry eyes, or just have a bad taste in my mouth.
- My body or breath may develop an odour.
- The fatigue I get can be overwhelming and walking with two feet can be a marathon some days.
- My kidneys, lung, heart and liver can all be damaged by this illness and its treatment.
- There are emotional side effects that come and go- like depression, memory loss, and difficulty concentrating.
- The medication I take has physical side effects because it may make me gain or lose weight, my face and appearance may change, there may be other effects, too.
- I may need to use walking aids, other aids like a helping hand, or sometimes even use a scooter or wheelchair. Other times I may need no help at all.
- I might not be able to drink alcohol or eat certain foods because of my medication and illness.
- The illness is here for the rest of my life and sometimes I will seem very well and back to the old me and sometimes I may become very ill and need to be in hospital. It's unpredictable.
- This is not contagious, and there is no evidence that it is something I have inherited or will pass down to children.
This is all because my immune system doesn't work properly anymore. It's lost its sense of purpose and has turned against my own cells and tissues instead of just protecting me from infection. Sometimes, I will go into remission meaning that I will do pretty well for a while and sometimes, I will have flares, meaning that things will get very bad. I can't tell when a remission or a flare will happen, and I don't know how long either might last.
There are some things you can do which would make it much easier for all of us and I would be grateful if you would take the time to read this and try to understand.
- My body is in a constant battle against itself. This means that I will have good days, bad days, and many days in between. I can't always tell from one day to the next, or even sometimes from one hour to the next, how well I will be, so please be forgiving when I must change plans at the last moment. I don't mean to let you down.
- Some days I will have all the energy in the world- and the next day I will be half dead. It's just the way things are- please don't say "You were okay to do this yesterday". I can't help it.
- Please don't judge me as a complainer, whiner, or as a person making more of their illness than seems necessary. Many of the problems I have are invisible to other people so please be patient, understanding and compassionate.
- I don't want to spend my days in misery, so even if I have pain, am very tired, or even if I am just worried, I will still try to be happy and enjoy myself. This doesn't mean I am physically better, it just means that I am coping. My health will never be "back to normal". "Healthy" and "Better" will always be relative terms for me now.
- I get lonesome and miss being part of the active life I once lead. Remember me, call me, visit me, don't give up on me. Please don't forget me or stop asking me to do things because I so often say no. It's not because I don't want to, it's because I can't. With a little help from you, I might be able to get more involved. I want to be part of your life.
- It's okay to talk about what is happening. I would rather you just ask than pretend you haven't noticed how different I am or just avoid me. It's okay for us to talk about how my illness affects you too. I won't see it as a betrayal if you talk to me about your frustrations with my illness as long as you don't blame me.
- It's okay to say "I know you don't feel well, but I don't want to hear about it today". Don't feel that you are obliged to listen to me but if you ask how I am, I am going to tell you so if you don't really want to know, don't ask!
I will try to remember that although my illness is a huge part of my life, you may not want it to be a part of yours. If you find me overwhelming, tell me! Challenge me, but please do it with love and compassion.
- Don't try to tell me that all I need is a little exercise, or just to get out, or try a certain pain tablet, or some new treatment, etc, because it works for you or someone you know. Please don't feel rejected if you try to offer me a solution for my problems and I don't take you up on it. I am under close medical care and am doing everything I can.
- You may think I just need to push myself a bit harder or that I am giving in to things too easily. One of the problems with this illness is that if I try too hard, it can set me back considerably. I have to be more patient with myself and accept my limits- I don't like it this way either but I have come to realise that one day of trying too hard and doing too much could make me much more ill for weeks. I need to be slow but steady.
- Sometimes, I need to sit down and rest, or take a tablet right away. When it gets like that, I can't wait. I really am at the mercy of my body and even though it may seem selfish I know that if I don't take care of my self, my body will get even with a vengeance because that is the nature of this disease.
- Some of my medication may suppress my immune system and make me more prone to catching some illnesses. Please let me know if you have a contagious illness like a cold or flu. A simple illness it can be quite devastating for me and I have to be careful.
- Please don't belittle my pain or fatigue. It makes me crazy when I hear "Yeah, you may think your back aches, but you just sit all day- I spent the day in the garden!"
I wish I could have pain because I did something I enjoy- not just because my body is hurting itself. It is okay though to tell me how you are feeling- you may find that I am more compassionate than most when you tell me how you feel because I really do understand pain and fatigue, and you will find I may have some advice that can help you!
- Please don't tell me I need to lose weight. I know. The tablets I take (steroids) make me gain weight, increase my appetite, and change the way my body stores fat. I am doing the best I can. Don't criticise my eating, please. It won't help either of us.
- I don't choose to be down and miserable but depression is part of this illness. I need you to remember that I didn't choose any of what this illness has done to me- I am struggling to learn how to manage, to cope with what it does to me, to grieve the loss of my health and to do the best I can to live the best life I can. Although I am grieving the loss of who I was before this illness struck and sometimes I get so frustrated I just can't help feeling sorry for myself, it's not just in my head- it's an effect of the illness, too, that I become depressed and anxious.
- Sometimes I will have "brain-fog". It's common in this illness to have moments when your memory is poor, or to find it difficult to think clearly. It will pass. It's not permanent- so if something is important to you please don't forget to remind me! I will be grateful. It's also OK to remind me to write something down, or to check back with me later. Please don't think I am ignoring you, being difficult, or just don't care. I feel terrible when I forget.
- I need to know if and how I can ask you for help. Sometimes, I will need more help and support than other times. Please let me know if you can help. If you can give me a lift, take me to an appointment, help me with an errand or a task- maybe make a hot dish for me some night when I can't manage to make a meal- please let me know. When I am stuck in the house because things are bad, please come sit with me, even if there is nothing you can do. Little things like calling me every couple of days just to check in- sending me a note, card, or email can make a huge difference. If you can, please reach out to me. Even if you can't do anything specific, just be my friend. Your friendship is the most important therapy I have.
- I can still do things for you. Please don't stop asking me to babysit, to run an errand for you, to do something I have always done before when I was well. I'll be honest if I can't- please, if it's something I did before, it's okay to ask me again.
- Please respect handicap parking and encourage others to do the same. Sometimes, people with illnesses like mine can't get out if they have to walk far- if everyone respected handicap parking, life would be easier for me and people like me who need those special spots. Defend handicap parking and it makes a real difference.
All in all, I need you to realise that I am the same person I have always been- my heart, soul, hobbies, interests, sense of humour and mind are all still there- it's my body that is turning against itself.
Please accept me the way I am, please forgive me for the things that have changed, please forgive me and try to understand if I disappoint you, try to accept that I am not in control of what this is doing to me. Please forgive me if I let you down ? I know that these changes are hard on everyone around me, too. I wish it could be different, for all of us. With time, compassion and love, things will eventually settle and we will all adapt.
These are the things I will try to offer you:
- I will be honest with you about my limitations, and if I need to change plans I will try to be as considerate as I can and tell you as soon as possible.
- I will ask you for help if I need it, but I will accept if you can't help. I will not have any hard feelings if you say No- I will respect your limits. Please don't ever feel guilty for being honest with me. I will try not to take advantage of your kindness and support.
- I will accept if you ask me to stop talking about my problems and what is wrong with me? I don't always realise that I may getting a bit wrapped up in myself and my illness sometimes, and I don't want to overwhelm you- just be honest with me.
- I will do the best I can to be cheerful and happy, and try to be good company if you visit or call.
- I will try to explain honestly if you ask me about my illness, symptoms or medication.
- If I am feeling sorry for myself I will try not to take it out on you.
- I understand that you also need to take care of yourself- if you need time, space or to get away for a bit, just be honest with me and I will do the best I can to understand. I really do understand the need to take care of yourself more than most people.
- I will do the best I can to keep myself well, by taking the medications as I should, by doing what my healthcare workers advise me to do, and through a good diet and good rest. I won't make myself any sicker or fail to take care of myself.
Thank you for reading this and trying to understand.