Sticky Blood-Hughes Syndrome Support
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I have a meeting with my ward manager tomorrow to discuss going back to work. I've been off for 5 weeks with tennis and golfers elbow. I am trying to find a piece I read that explained how hughes makes you feel on a daily basis. I can not find it.

Can anyone help me please.

I think it was written to give to family and friends so they could read how we feel daily.


16 Replies

Hi bevers, sorry for the delay.

I have found this link -

See if it is what you wanted, if you need more Just shout :)



Thanks Lesley :-)


Here is a letter we can copy & paste in word & print it off for family & friends....sorry it's so long! I cant work out a way to put a link to a word document on here! :

Letter to family & friends.

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 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 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.


What a amazing explanation of what we all go thought. I had a really bad day yesterday, bad brain fog, auring with all the people that do care and could not expalinwhy and today after only four hours of slee last nite, i feel amazing and people comment on how well i loook today. I might print this to show my ward manager and then she might have more of a idea of what wrong, before making a decision on whether i can contiune nursing premature babies or move me into a office job. from Fiona.


Thanks Suzy that's the one i was thinking of



thought it was.....hope it help you x


Hi Bevers 1 good luck with your return to work meeting. Have you got occ health supporting you? i read you work full time that must be so hard i am currently on long term sick following tia's but will be redeployed after 30 yrs nursing but i work part time and struggle with 3 days - just find ward work so much harder and stressful hope you have good support kathy xx


ps our condition is covered by the disability discrimination act and through occ health they can adjust sickness allowance - if your trust is like mine nurses now get disciplined if they have two episodes of sickness in a 6 month period. It was 3 episodes that has been recently been changed because they are trying to clamp down on sickness.


Thanks Kathy,

I knew we came under disability, but not to what degree. I work as a stroke thrombolysis sister. My main role i have little problems with, it is the ward work that we keep being expected to do first and the thrombolysis work, unless a patient comes in. Washing 10 stroke patients in less than 4 hours is hard work, especially as i always work the acute side so heavily dependant. I love my job and don't want to move, but i feel that is what they are looking at. I had 4 months in 2010 due to my heart, 5 weeks now for arms.Our occ health are not great. Take care xx


i work in neurosurgery so know exactly where you are coming from as now we are under "acute stroke" umbrella as well but the majority of our patients either have trachys ng feeds etc or stroke or bad spinal ones. My body just could not cope in the end i love acute neuro but its a hard slogg. I got fibromyalgia and have had hughes since 1990 following clots on the brain! bizzare really both of us being neuro nurses!! lets hope your ward manager is understanding and will give you light duties or just allow you to do your role without needing you to do the beside bedbaths - i had tennis elbow its a real pain even trying to do a manual bp was painful - i have the opposite great occ health support but my 25+ yrs service on the wards dont cut any butter!! kathy xx fingers crossed for you


ward manager says i can do ward clerk work for a few weeks as we don't have one. need to see occ health later on, plus get gp to sign me back for non patient contact work. just can't get hold of gp at moment. take care xx


Hi Kathy,

I am a radiographer, I have SLE, and Hughes APS....I have had to fight tooth and nail with my directorate to reduce my hours and change to nights which are not so heavy. Dayshifts are heavy trolley cases and the volumes are much higher, I have managed to reduce my hours to 30 but my main bugbear is the lack of empathy from some of my collegues usually the higher banded ones who you think would know better.

i have had comments like "if you cant do all the job you should not be here", and that I am cherry picking shifts, usually not to my face but I have found out about them.....before i went onto nights there had been loads of problems covering these shifts as nobody wanted to do them, then when I took them on I was "cherry picking" I have also had to keep one of my dayshifts on, so in a week i go from 2 nights to a day which plays havoc with my steriods and sleep pattern, and the effort of just holding the job down is dreadful...without the added strain of having to deal with collegues who look at you like you are making your illness up.

I hope you team are more supportive, I have the backing of occ health but the radiolgy directorate are only interested in a generic radiography that will work a set shift pattern and transfer between any hobson's choice really



hi Jan Im sorry to hear about your working dilemma. I worked nights only then did a mixture like you are doing but I found it affected my inr's plus increased fatigue. I don't know how u cope with 30hrs I struggle with 20. Its a very sad reflection of current managers far cry from the support they use to be. Their roles are not about supporting & working to get the best from their staff its all about dictatorship if you can't or won't do what your asked they don't want to reach a compromise it seems they are happy to lose good staff to replace them with staff of less experience that don't speak out!

I think occ health staff are in the know of the struggle people like us are faced with but their hands are tied the system covers its arse always.

Its far from family friendly now managers want full timers who will rotate days & nights - my managers don't like part time staff they got no place for them - now I'm finding tactics are used to push staff out. I pay union fees but its frowned upon if you mention seeking advice from them seems pointless paying all these years to stay in the union.

its scareybbeing on long term sick as i can't afford to go into half pay but need redeploying been told tho that is dependant on vacancies at the time but like your role they expand duties & expect rotation don't think there are many jobs nurses can do even what was deemed cushy jobs like out patients & day case are very stressful. I hope occ health can help you take care Kathy xx


Hi Kathy,

One of my friends who has recently been diagnosed with dyspraxia has been told they can redeploy her to an admin role...but they said if no suitable role could be found within a 3 month period she would effectively have to resign...I think this is how the NHS manages to get rid of disabled staff...they act as if they are doing everything to help but effectively get rid of people by the back door.

I am trying to change my hours to all nights and have an appointment with the occ health consultant next i am collecting ammunition, my rheummy has already wrote to them to say i need a regular shift pattern as at present the way my 6 week rota works every 3rd week, in a 7day period i work 60 hours as 2 shift patterns flow back to back....i have pointed this out and still nothing has been done. however, my department manager has recently took on a new member of staff who is a friend of hers and she is allowed to work 9.15am until 2.15pm two days a week as she has children, as do i... but they wont let me work the hours i want.....however, i am also covered by the disabilty act and i can now prove they are discriminating against me....isnt it ridiculous though that you have to fight to keep your job, when by law they are meant to make "resonable adjustments" to enable you to stay in work.

Its hard enough coping with a long term chronic illness, without the added stress of work constanly being on your back......i dont know about you but i am going to fight tooth and nail to make sure they adhere to their legal obligations......if you have any reviews I would definately take a union representative or say you want to take a family member in, i took my husband to my last one as i said my memory when stressed wasnt great (which is true) and he was a real asset...dont let them bully you out of a job

take care



That's sounds a fair compromise at present its a nightmare getting hold of GPS and appointments for inr I do weeks in advance! Good luck xx


Hi there, best of luck with what you are doing, and it was useful for me to re read that article on how things feel. Mary F x


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