This is a picture of me on a cruise with my family. We went to the Canary Islands in June.
I use ambulatory oxygen but I took it off for the photo while I waiting to go on the Bumper cars. I had to go in the car with my husband because I took the oxygen off and I would be very breathless walking across to the car.
Before I went on the cruise I had a ulcer in my left eye because of dry eyes due to Sjogren syndrome and I was also waiting to have Rituximab when I return from the cruise (which I have had now). I have damaged lungs (Pulmonary Fibrosis) caused by the lupus or MCTD.
The reason for this post is to say there is no reason to give up just because we have been diagnosed with a chronic disorder. If you have the energy always strive to look your best.
When I go to see my GP or Consultants I always try to look my best and they complement me because they know how ill I am. My GP always say 'no one would believe how ill you are by just looking at you so well done Charmaine for looking so beautiful in her photo.
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Maureenpearl
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What a great photo! I'm wanting to travel even though I'm feeling pretty rubbish, but I don't have anyone to help me so planning is very problematic.
Tbh, I've found the opposite problem; if I look my best, then I get told "Well you must be feeling better!" and my symptoms are glossed over and ignored. It's sort of frustrating that I have to 'look the part' to be taken seriously but I simply can't go into my GP looking well, or he just won't listen (With that said I probably just need a better GP, but in a rural area, that's not so simple to do).
So sorry you have no one to travel with. I went on a cruise from Southampton last year with my mother and daughter and they were no help as they though I look alright therefore I must be. I spend my time ringing my husband and crying about their attitude and behaviour.
If you were living near me I would be happy to help you plan your holiday.
At the moment I'm having a flare and I spend the weekend vomiting and my joints are so painful right now, I would love to be on holidays again (I'm sure I'm allergic to my home), I always feel so much better when I'm away.
Your GP knows how I'll you are by your bloods and test results so if you want to look your best when you visit do so.
Afraid it doesn't work that way for mine, couldn't even get them to give me blood tests if I looked 'fine'. And I don't dare do it anymore. As I said, some people are lucky with their health pros, some not so much. I'm glad you can rock your awesome though (and I feel you about the family members ignoring you, last trip to friends turned out just like that, I spent all my time in a hotel).
I'm all for going to Vienna or Venice soon I hope. Maybe see you there!
I agree with Silvergilt above. In my early visits to the doc I made an effort and was told 'you look really well, I'm sure it's nothing'. Daughter insisted on one visit that I not make 'an effort'. The doc was visibly shocked when I walked in - I was limping, in tears, pale with dark shadows under my eyes (I usually wear cover-up foundation) and it was then that I was referred to a rheumy (still waiting for results - she also said in her report - "patient looked well"!! - the fact that I limped my way through the hospital but put on my 'happy face' as daughter calls it is not enough).
My friends all tell me I look 'great'. My family - especially my daughter who sees me first thing - knows differently.
I think some health pros are very good at not being taken in by appearances, others just assume that because you look 'well' and you're smiling (my sense of humour has kept me going) then you must be okay so why do extensive blood tests.
To the original poster - keep you're smile and keep holidaying x
I went for my Rheumy outpatient's appointment once and I couldn't drive myself there so my neighbour took me who was in her seventies. she dropped me off and she then had to drive all around the hospital to come back to the one of the car parks (the disabled car parking space outside the outpatient's dept was taken away) to park the car and to do the same to come and pick me up.
I asked the nurse if she could get the porter to take me to the car park and she looked at me as if to say why can't you walk there, then she said the porters don't do that. My neighbour went off to fetch the car and the nurse then came back to say the porter will come for you now (I think she must have gone and told the Rheumy who then must have said she can't possible walk that far to the car park.
So yes you are right some health care professionals just look at the outside and judge.
You look awesome! I also believe in presenting the best possible version of yourself to the world. It can create issues - I was severely anaemic but refused to leave the house without my hair and makeup done which confused friends and acquaintances no end. Doctors had my blood tests so knew there was more going on than met the eye. I did have a couple of episodes where I turned up for appointments just after fainting episodes but generally I managed to look presentable. If anything, it helped keep my own head in the right place.
My friends and church family get really confused and try to tell me all the things that I should be doing until I get very breathless and then they are so shocked and apologetic. xx
I've had conversations with members of the ladies' prayer group along the lines of: 'Aren't you glad? It's not cancer.' (Wasn't investigated and I think they thought I was ungrateful when I didn't join in with the enthusiasm because I was so knackered.) 'You're looking so much better. Are you finished going to the hospital now?' I didn't know where to begin with that one!
People mean well and I'm always thankful for their interest but trying to explain 'chronic' to some people is too much grief and I think they take it personally when I improve but am not 'healed'!
I am in better shape than I was before Christmas and in the new year - I'm back at the gym and did the British 10K in July - so I do consider myself very fortunate - blessed, you could say! I also know I can't take it for granted!
My house group understand as I take the time to explain to them how this illness affects me daily. I haven't been to church since April because I am always having some sort of infection and now Iv'e had the Rituximab infusions I'm trying to stay away from people as my B cells have been destroyed and it's too easy to catch infections. I'm also awake most nights and only just going back to bed at 6am so would fall asleep as soon as the sermon starts.
I'm so glad that you were able to do the 10K with no fatigue.
All we or I can do is rely on God each day to sustain and keep me as my God is bigger than lupus.
Sometimes I think it doesn't matter how well or ill you look, doctors don't seem very interested. I realised this at my GP surgery a couple of years ago. I was there as an emergency as I was having an asthma attack. Was diagnosed with adult onset asthma and had never had an attack like this before. With no appointment I had to sit and wait. I gradually got worse to the point I was really struggling to breathe and couldn't feel my fingers. I was in tears in the waiting room but the doctors kept walking past me! I had my mum with me thank goodness. A lady in the waiting room was concerned and spoke to the receptionist. Still didn't get a doctor but moved me into a side room! It took more than an hour after arriving at the surgery before a doctor, not my usual GP at the time, saw me. My usual GP had walked past me more than once, had even finished his surgery, but still didn't see me. After I was seen the doctor was really good. I was given two steroid tablets which worked pretty quickly. Given a prescription to get more from the chemist round the corner then had to go back to be checked again.
I complained to the practice manager and was told 'If you have no appointment then you have to wait until the doctor dealing with emergencies that day is able to squeeze you in'! Think this policy needs looked at. Some emergencies could wait but sometimes an emergency needs seen sooner. If it happens again I will bypass my surgery and go to A&E.
That's why they have triage in A&E! That sounds awful. I wouldn't be satisfied with the practice'scresoonse either. I'm not one to stir up but we had a child drop dead with an asthma attack a number of years ago where I work. It was so sad and could have been avoided - a long sad series of 'if only'. If hate to see it repeated.
That's disgraceful! And yet they tell people not to go to A&E!!! I've had asthma since my early 20s and it can be very dangerous unless treated quickly. I know from experience how traumatic a full blown attack can be. x
I can empathise with you and agree surgeries need to have some policy in place for urgent appointments for serious long term illnesses. I have RA, osteoporosis, osteo arthritis, cervical sponditilis. I have had bone graft to my spine as it is eroding. Have been on infusion treatments for 10 years (rituximab, influximab, enbrel, currently on toczilimab) as well as steroids, celocoxib, tramadol, was in so much pain one night had to ring my son to come and take me to see GP. I was told to go to surgery at 10am for an 'open access' appointment. Sat in surgery in absolute agony, after an hour my son asked how long before I saw GP. Receptionist said I had to wait my turn, at 11.50am told my son I couldn't sit there any longer. He told receptionist he was taking me home and the GP would have to do home visit. Miraculously receptionist said I would be next! Saw GP who said I had kidney stones or severe kidney infection and arranged for me to be admitted to hospital. and called ambulance as he said I was too ill to go by car. Asked why I hasn't called GP for home visit or at very least should have gone to surgery early morning. When I told GP I phoned at 8am, given open access for 10am and seen eventuality at 12noon. He was horrified and said reception staff would be spoken to. He has been my GP for 10 years is very sympathetic to my health problems, never dismisses me as being neurotic etc. I wish others on this site could have better treatment. I also have a great rheumy team. They have a fast track number, If I have concerns leave a message and they get back within 24 hours.
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