I am wondering who out there (other than me!) wears a mask on a regular basis?
As a teacher in a huge cramped secondary with windows that barely open and packed corridors I do…but I’m the only one. The one other “clinically extremely vulnerable” person stopped ages ago but I don’t think her kidney function is as poor as mine 🤷♀️. Or maybe I’m some kind of dinosaur who should have moved on my now.
genuinely don’t know!
I also wear one on the tube/ train and in shops.
One of a tiny minority at best.
I alternate between feeling that I am the sane one and that everyone else is living in denial…and feeling like a fool who just needs to get over it!
My lovely family have had enough and want to get back to “normal”. My pleas that 2019 is over and not coming back any time soon make me sound even more feeble to them, and I have become a person who rants! Not who I used to be at all!!
I would love to hear other immune compromised takes on this. Hoping everyone well…
Bon xxx
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I think this is personal choice. My understanding of the science is that unless you’re wearing a FFP3 mask you are protecting others rather than yourself. Having said that I usually carry a mask with me in my bag but I rarely use it these days. I personally think worrying about it isn’t healthy anyway…I have enough trouble trying to get on with life coping with uncontrolled RA without thinking about more potential problems. If it makes you feel more comfortable, wear whatever you like and don’t let anyone tell you differently but as you’re asking for my take on the situation - I just accept that germs and bugs are part of life and even though we’re immunosuppressed we have to accept that.
I do tend to choose tables near doors or less crowded train compartments etc just because I think ventilation is a good idea but I wouldn’t spoil a night out about it. I recently caught Covid after a trip to a busy Blackpool hotel. Would I repeat the trip…damn right I would…we had a fab time and had the best laugh I’ve had in ages. IMO there’s no point in taking the meds if it means I can’t live the best life I can.
Hello HeadInASpin.On reading your reply to a question I noted that you mentioned your RA is uncontrolled. Do you mind me asking for how long? I have been uncontrolled since diagnosis in 2013 and am starting to feel down and fed up that nothing seems to help me. I'm about to have another go with Rituximab in a couple of weeks as my last session was interrupted with sepsis and i'm really hoping it helps. My bloods are constantly elevated and of course there's the pain, chronic anaemia and fatigue to deal with aswell. How do you stay positive?
Hi BB. I'm sorry to hear that this has been going on so long for you. For me it's nowhere near that long. I became very poorly, very quickly in Jan 23 and was diagnosed in May 23. I've only tried DMARDs so far but unfortunately these have not been successful. I've had a couple of weeks here and there where I thought things were improving but unfortunately it's been a case of one step forward and two steps back. I have very high disease activity so I'm hoping that the consultant will come up with a new plan tomorrow morning at my 9.30am appointment. As for staying positive... sometimes I'm not... but honestly the advice from people in this group and a lovely lady from NRAS have given me hope. People like AgedCrone who have tons of experience keep telling me that there are loads of drugs to try and they have given me the belief that I'll find the right one for me eventually. I realise that in the scheme of things my journey has only just begun but the feelings of hopelessness can land upon any of us at any point. Might I suggest that you give NRAS a call? Sometimes talking to someone who truly understands from outside your normal circle can be very beneficial. Best wishes Spin x
Thanks for your reply spin. Yes NRAS are great at what they do and this group has a wealth of info. I hope you find a treatment that works for you soon and things improve for you. Good luck at your appt today. Take care
I personally stopped a long time ago, when evidence re those of us with inflammatory arthritis, using dmards and biologics weren’t at increased risk of serious illness. Hopefully this paper reassures you. My husband had it twice, as he had to continue to work. The first time he was very poorly, and I had to care for him, and never caught it. My rheumatologist said it was probably the tnf inhibitor that helped me, as they were starting to use it for some covid patients.
I stopped a long time ago. I see many people at work ( who in turn are in close contact with many others every day) but I don’t feel the need to wear one any more and neither do those I see. You definitely do what makes you feel comfortable but not rant and try to get others to do the same. It’s a personal choice, live and let live, life is too short and the stress isn’t good for you.
I am immunosuppressed and always wear a mask when others are present indoors - shops, trains etc with the exception of the dentist where I ask them to wear one.
I am retired and live alone which I suppose makes things easier for me. A few (and only a few) of my friends have made indications that 'I should get back to normal' which, to be honest, coming from people who are not immunosuppressed, I am not very keen on. I do not personally know others in my situation.
I quite understand how you feel and I often feel conflicted too.
I've caught covid once from a friend whilst outdoors and do not want to get it again - I got an antiviral infusion (the process for which is a real palaver) but it was still very unpleasant and I have had long covid - continual headache/loss of taste and smell/swollen throat - for 7 months now.
I feel that we live in a society where those at the top are more interested in getting things running without restrictions than in the health of its members. I definitely think that I am sane but the social pressures are heavy. But, at least in my position, I can withstand them.
I still won't go to restaurants that are packed. I always where a mask on London underground. I couldn't care less what other people think or say. I am cautious but that doesn't stop me from going out and about
Do as you feel comfortable ….it’s your life…..enjoy it.
I’m old, & I live alone. I was of course sensible during the pandemic but now I don’t feel it necessary to hide myself away or to wear a mask. I had covid once very mildly, & I intend to enjoy the rest of time I have left in this world.
I reckon if I have beaten all the diseases I have experienced already including cancer,I will not let fear of a Chinese virus spoil the time I have left……& I honestly don’t think wearing a face covering will help me achieve that.
I’m on Rituximab and have had covid several times. Each time I have felt really rough with it, however antivirals have always worked really well.
I stopped wearing a mask ages ago for two main reasons. First I’m an outgoing person, I love interacting with people and I find wearing a mask feels like a barrier, I want to be able to smile at people. Secondly I live in a house with two teenagers and a husband who travels the world with work, unless I wear a mask all the time in my house I’m not sure it would make much difference wearing one out and about.
Having said that I do still prefer to sit outside at cafes etc. if the weather is nice, or at least choose the least crowed area.
At the end of the day it’s a personal choice. If wearing one makes you feel more confident to face the world then wear one.
Thank you so much. I hear you and am aware of the irony as I have two grown kids who are very much out in the world! But to be honest I worry about them too! Have a great day.
personally I would prefer to breath in the fresh air.I hated having to wear one anyway.I am a bit of a rebel 😆 You see lots of people still wearing masks but don’t wear them correctly which makes me rant inside.I have had covid twice . It’s every ones free choice
Thank Fra. I must admit I know what you mean about people not wearing masks properly. I often see a couple of really elderly and frail ladies in my area on the buses with them around their chins. Have a good day.
Being on methotrexate has meant I have had about nine vaccinations and am involved in antibody response research which has shown I have produced normal levels of antibodies. Because of this I feel happy without a mask and I mix. I caught covid once, got antivirals, only mild symptoms. I feel this is my protection, not a mask. But I do understand the psychological reassurance a mask can gjve. We have been very frightened haven't we.
Hi Ginny. Yea I feel I have got some lingering trauma. My husband was terribly ill march 2020 with Covid and then my mother died of it. It’s hard to let go of all that. Appreciate your reply
I were mine on the tube still and last time I went to the London offices for an away day I wish I had done in our meeting room as 4 of us came home with Covid! Do what you feel is right for you.
It’s a personal choice and if it makes you feel safer just continue. I have never had covid (touch wood) and it seems to be going about in my little town again. I would actually body swerve someone who is wearing a mask these days as I often wonder if they have covid and that’s why they are wearing one. It took me a while to stop wearing one but we have to live with this virus, my vaccines are all up to date but know loads of people (my daughter included) who won’t get another one as she thinks it’s something we have to live with. She is a teacher and is mixing with a lot of people. Best wishes x
Hi! Thank you for your reply. I appreciate your input. The other day someone in a waiting room looked at me and then went and loitered outside that door. It was only then that I realized they must have thought I had COVID due to my mask! Have a great summer
Well I sit in the doctor's waiting room and if anyone coughs I think I'm so glad I wore my mask! You never know as folks hardly do tests anymore and it's on the rise again at the mo. So I feel better in those places with my mask. I don't care what anyone else thinks. X
I wear one still on occasion. If I go to a big superstore where there's lots of people etc. I still wouldn't go to an indoor concert but that doesn't bother me anyway now. Hospital and GP appointments I always wear one. I'm going on a cruise in October and if it's busy indoors in the evening I'll wear one. But it's entirely up to you. You have to do what YOU are comfortable with and ignore everyone else, it's not their life or body. I don't want to get flu or anything now so I'll do what I'm happy with and s*D the rest of them. I've had COVID once, very mildly no anti virals needed. Hubby has had it 3 times twice quite bad, I put him in the spare room and stay away from him😁
Hi Haz thank you for your reply. I want to keep that attitude because I think it has probably enabled me to do more than I would have done without the mask! Glad you managed to swerve a couple of infections despite your history bringing it home!
I still wear a mask in shops or anywhere busy . I was freaked out by a rheumatology nurse who told me I could die if I had covid because im on rituximab and my white blood count if always very low .
I have had covid once and got antivirals and felt awful but recovered well. Its part of my routine now so I will continue to wear one as I feel more comfortable.
The only time I've worn a mask recently was when I had to go out shopping briefly while I was COVID positive. I used hand gel and avoided touching anything I wasn't buying and scanned at self service till.
My son wears one still. He said he likes not getting ill. He has severe chronic fatigue and he really doesn't want long covid on top of his long fatigue.
Covid isn't over, and this new variant seems to trigger long covid just as much or more than previous variants.
Despite a lack of widespread testing, rates are rising in the UK for both the numbers of cases and deaths. So if you choose to wear a FFP3, now might not be the time to stop wearing.
Thank you for your reply. You’re right about Covid - it is absolutely everywhere at the moment. At least it’s finally stopped raining! Have a good day.
I generally wear one (FFP2 or FFP3) in crowded indoor settings such as public transport and healthcare, and prefer to eat outdoors if visiting cafes or restaurants. It does feel uncomfortable if I’m the only one wearing one, but there’s a lot of evidence of the long term damage Covid can cause even if the acute symptoms are mild, and I have too many things wrong with me already! It’s maddening that schools, hospitals, etc., could be made so much safer for everyone if HEPA filters were used to clean the air there. That would help reduce the amount of sickness due to all air-borne pathogens (not just Covid) in society in general, so the financial investment would be of economic benefit as well as improving public health.
This is exactly how I feel! I get cross because I feel there is an attitude of denial which means small but potentially hugely helpful things just don’t get done. Have a good day
I figure nobody is going to look after me but me so I wear a mask when I am in public except in a restaurant. I'm also immunocompromised and have a have a few other medical issues.
My friends are accepting of my choice. my caregiver wears one when she is here to and isn't required to, bless her. I've had a few muttered comments from the public, a few eye rolls and sniggers and I really don't care what other people think. I'm not the only one to wear a mask, a few others do.
I think it’s just a matter of individual choice. I stopped wearing a mask a long time ago. I am immunosuppressed and my white cells/neutrophils are always lower than they should be. I have just retired but was working on the reception desk in a busy university building; it was hard to communicate with students wearing a mask and through a screen! I avoided going to restaurants, concerts etc for a long time but now don’t really think about it. I have had covid twice, both times caught from my husband who caught it at work! So I feel that even if I never went out or always wore a mask whenever I did go out I would still have caught it anyway!
Dear APP thank you for your reply. That is a fair point - my husband brought it home very early in 2020 but amazingly I managed to avoid it. Not so when my daughter caught it at school.
I would continue wearing a mask if it helps you feel comfortable. I am not immunocompromised but hubby is. Sadly we both caught COVID when he had a cataract op a couple of months ago. It was the only place we had been in weeks so had picked it up there. Hubby had infusion within 3 days of being positive but still ended up 999 to hospital. He was already on his rescue meds for Haemophilus influenzae but on admission still had that, COVID, pneumonia and after a day in hospital MRSA. Out of hospital now but his breathing is still very poor despite nebulisers etc, his neuropathy and RA are at a high. Neither of us were wearing masks. I think when hubby has his other eye cataract op we'll be wearing the FFP3 masks, especially as people are coughing without covering their mouth and nose with no thought of other people who may be vulnerable!. Take no notice of what other people think it's how you feel that counts. xx Joy
Dear sunshine day. So sorry about what happened to your husband. It is awful that healthcare settings are so lax about protecting their patients. I hope he continues to improve. Thank you for your reply.
I don't bother with masking. Haven't worn a mask since about 3 or 4 months after covid hit, except for cases where an establishment (nursing home, hospital, etc.) required it.
I stopped, but, first train journey in years this week, train was hot and packed, and have ended up with a nasty cold, wish I had wore a mask now, I have rituximab plus other meds. There are still a few people around wearing masks on shops and there were a few on the train .
Dear pooch. I hope you are feeling better. Yes the trains are packed during the school holidays and always seem to be full of people coughing! Hope you are feeling better.
During the lockdown period, I never went anywhere without a mask and because like others I am extremely vulnerable due to age, taking RA medications etc., I followed the rules. Even then I found it a real problem to hear and understand what people were saying as I am very badly affected with deafness and rely on being able to read peoples lips. With a standard mask it prevents this function and particularly if the people you are talking to have a strong accent. I tend to have one in my pocket but don’t wear it unless I find it necessary.
Good morning thank you so much for your reply. I have hearing loss and sympathies with the difficulties when you can’t see what peoples mouths are doing! Wishing you a lovely day.
yes! I’m still a mask wearing inside any building or transport, I’m on methotrexate and humira and covid makes me housebound for 3-6 months so, although I am extremely bored or wearing a mask it does make sense still to! On the plus side I haven’t had a cold in four years!
Good morning- great point! I have had a long run without (hope I’m not jinxing it haha) I am glad I’m not alone in mask wearing and wish you all the best.
Not worn one since forced to. Had covid 3 times, twice pre RA diagnosis and once since, hit me quite hard all 3 times, but no worse since on meds and a similar illness and recovery period to flu (3 days not able to get out of bed and 4 days slowly getting better) I don't think masks protect in any way unless used alongside very regular hand washing and disposing of mask after each wear.
I wear an N95 mask on public transit and in elevators and anywhere there’s a crowd. I don’t care what people think. I have more than enough health issues without exposing myself to theirs.
Hi MM. thank you for you reply and your robust attitude. It gives me reassurance after my wobble. I think having to be in a crowded space every day does make it tougher to avoid COVID without a mask.
I’m extremely immune suppressed and my RA is raging atm and has been for a few months so I don’t go out very much at all. When family come to visit I don’t expect them to wear a mask either unless they want to. A member of our family was in hospital after a fall and my hubby visited the hospital and brought Covid back home to me. His symptoms were very mild and I was very poorly for 10 days but even then I didn’t have the antivirals as I had a really bad intolerance to them the first time I had them. I’m at very high risk but after 10 days I was as right as rain. It’s an individual choice but for me no more jabs and I will still think twice whether I wear a mask or not but some medical settings still require one so of course I comply to that. After so many years of being afraid of all things virus I’ve taken back control and now do what I’m happy with. So what I’m saying is do what’s right for you.
My GFR is 20 so CKD is always a priority. But I’ve not worn a mask for past two years and I don’t work in a school. That is probably the real issue although treatments are now good and Covid will be less and less an issue. That is not downplaying your worries as really only you can decide to continue or not. I got Covid after the worst first year, have had all my vaccines and now feel it’s just a fact of life we will have to adjust too. So whatever you decide is right for you is right for you. I don’t think that helps but having CKD I don’t think is really an issue unless your on dyalasis.
Dear ML thanks for this helpful info regarding the kidney issue. I think MTX is responsible for my poor kidney function. The go is always fretting about it while the rheumatologist tends to shrug. Take care. Bon x
If it was then they'd have stopped it there is no doubt about that. And kidney function does decrease with a number of factors. If you have an issue what does your Nephrologist say ?. I'd have though he/she would have like mine been onto RA and stopped all medications until the issue was sorted or the reason found. I'm sure that you'll be guided by your professional advisers but medications can be adjusted to allow for low clearance rates so even if it was MTX it doesn't follow that it would or needed to be stopped unless its caused an injury. It's up to the Nephrologist but don't forget MTX used to be used in transplants like AZA still is. And LEF they are cross over drugs. If I were you I'd want to find out if the kidney function is an actual calculation shown as a trend over time with body weight, height etc taken into account so GFR or eGFR as a one off calculation because that can change. Make sure you're well hydrated and ask more questions. It was a medication that did my kidneys and I spent weeks and weeks in hospital but it's very, very rare. I know what happened to mine as kidney issues are taken very seriously and believe me I had a lot of tests, even genetic ones. And so don't worry too much as you need a lot more information to actually know if you have a problem and why.
Yes, but i tend not to be amongst big groups of people, always wear it to doctors, hospital and if I had to go on a bus or train then definitely would xx
You have assessed your risk based on your health conditions and are doing what feels right for you and that’s what matters. Wearing a mask in crowded or poorly ventilated spaces, such as your school, is very sensible in my opinion. Public transport is considered high risk. I wear a mask in these situations and always when going to hospital or GP appointments.
I stopped wearing a mask ages ago. I have been to lots of big crowded events and been fine, I caught covid from my family! Shielding ruined my mental health and I won’t go back to it. I had to have treatment for anxiety disorder. Nowadays I keep my hands clean, carry wipes with me too and try to keep away from anyone coughing - all good things to do when you have RA anyway as you’re likely to be on medication that suppresses your immune system. I still see a few people out and about with masks.
I am very careful where I go, I would never go somewhere like a cinema or theatre where you are enclosed with lots of other people. I haven't worn a mask for a while but haven't been any where that I have felt the need to. I do however think people are thoughtless and tend to go out however they feel.
I’m a virologist. There is a benefit to the person wearing a mask that has several layers. OK so I wouldn’t open a vial of SARS-cov2 without a FP3 mask on but any layered mask will decrease viral load. So yes I do wear a mask at times still…it took me 3 years to catch it. Even more important is hand sanitizer. I think most of what we pick up is in touching things and then eating/ rubbing eyes etc. I tend to wear a mask when in hospital (I caught it off a nurse when visiting my dad who had sepsis - I took my mask off because it was difficult to talk to her after a few minutes of talking to her I could see she had an infection and put my mask on but it was too late by then). I don’t see the point of catching diseases when you can take simple steps to reduce risk. Apart from that once, I’ve not had a respiratory infection since masking up. I started wearing a mask as soon as Covid cases were on the rise in the UK. The advice that masks were of no benefit ant the start of the pandemic was incomprehensible to me.
Dear GR thank you so much fro your perspective especially given this is your area of expertise. I’m interested in what you say about hand hygiene- I’d sort of given up with that ( well as regards covid) so sorry you caught it off a nurse. That’s what happened to my mum when she was in hospital.
Hand hygiene has a huge impact. You will often see people blowing their nose into a soggy tissue, sneezing or coughing into their hand. They then open doors, use handrails, touch items in shops leaving a trace behind them. A common route of infection is through the eye…we touch a contaminated object and rub our eyes. I have a generally itchy face and touch it a lot so I tend to be extra cautious. I always gel after touching key pads. If I touch door handles I’m conscious to use hand gel before touching my face or eating. I try not to be over fastidious and look at risk (indoors/outdoors, low/high incidence, crowded/quiet)
I have always listened to/followed my local virologist Professor Stephen Griffin of the University of Leeds and he’s always advocated quality mask wearing and relevant hygiene. Your last sentence made me nod as I just can’t fathom that either. 🤷♀️
You met your partner there? I worked at the University of Leeds for a couple of years early 90s. The loooooong physics/admin building. I was accepted to study there for my Masters in Fine Art in 2007 but they didn’t have any printmaking facilities so ….. no good!
No I was already married when I went there in 1997. I was in the Old Med School followed by the Garstang building. I really enjoyed my years there (about 10 in all). The virology team was such fun. Pity Leeds wasn't suitable for your studies.
They didn’t have any printmaking studios which I wanted to do as well as the theoretical side. I’m glad you enjoyed your time at Leeds. I worked for the Registrar at The University of Leeds. 1981/83. My cousin was a research fellow in plant sciences there. I love Leeds. x
(I've checked through the thread quickly but couldn't see if you said anywhere).
Thanks
PS it seems that wearing a mask can provide a strong psychological boost - a positive internal message that "I'm far less likely to get ill" - and this (placebo?) effect may be worth having.
Thank you for taking the time to reply. I wear one of the fancy ones. I always find it a little ironic at medical appointments when I am in an Ffp3 and the doc is in a “baggy blue” although my husband would argue that is evidence of me being over cautious 🤷♀️ definitely helps psychologically that’s for sure.
I wear an FFP3 mask on trains, underground, shops and supermarkets, in fact anywhere that I feel vulnerable. I just carry on doing what I feel is right for me and don’t apologise for this or criticise what others choose to do. I notice that some people stare as my husband and I are often the only people wearing masks but I find that generally people accept it without comment.
Obviously if it isn’t appropriate to wear one eg bars or restaurants I don’t do so and accept the risk as I want to enjoy life as much as possible. I go out and about when my health allows me to and try to protect myself as much as I can.
Understand your concerns and really it's a personal decision. As a teacher guess you know the risks so act accordingly.
I am going away with family end of August and will wear my mask in the airport, not on the plane air is cleaner on the plane. I will have cleansing gel with me and will clean the tray table etc. At the last airport I notice some still use masks, I always have one with me in case I feel in an area with many people and possibilities of infected people. My daughter-in-law is immune compromised too so we are in harmony about protecting ourselves. Our grandson is 7 years old so exposed to various infections and I don't avoid him as not keen to totally avoiding all infections. I got Covid last year when on a holiday with a company for ones with disabilities, and they took no precautions when someone became ill with Covid, 🙄. I'd not taken my Spring booster so guess I was more compromised as a result. This year I've taken up my boosters. In the end I try to take all precautions as much as possible then relax.
Regarding Covid it is still around, and it's possible to look up how many cases there are in your area? I tend not to discuss the topic with ones not affected.
Dear Happy thank you so much for your reply and I hope you have a great holiday. I went on a plane in May and prior to travel I read that the air filters on the plane only start when it is airborne so it might be worth keeping your mask on until you’re in the air. Happy travels!
I still wear a mask regularly in crowded places .. shops etc. I no longer go to theatres or cinemas etc. I am still clinically vulnerable as on Rituximab and managed to avoid Covid until last September / October when it was brought home by himself who wouldn't isolate although I did try to. He may be rethinking it as it took 48 hours for me to get antivirals in hospital and it was a very difficult time. The medics were very supportive. I was pretty ill for just 2 weeks but am still here at 82 and beginning to go out more but solo. I joined a small max 10 distanced yoga class and have taken over the granny flat as a retreat. With better weather meeting up with pals and former colleagues for open air coffees etc, gives me company. So if you are also CEV your employers need to know and support you, unless it's different in your UK region. I wish you safe space, support and understanding family.
PS The medics in the isolation unit told me it is wise to keep wearing masks due to my age and the drug I'm on, and I still use FFP 2 or 3. Take care , you ! x
Dear Granamie thank you so much for your reply. I hope this warm weather means you can do some enjoyable things in the open air. I appreciate you taking the time to reply.
I don’t wear a mask but avoid going to crowded spaces if I have something fun coming up and don’t want to get sick for it. Probably silly but whether it is a cold or Covid I don’t want anything to spoil my plans.
Thank you so much for your reply. Not silly! I feel if more people took small but sensible Precautions there would be far fewer plans ruined. Have a great summer
I generally don't wear a mask now. However, I use lots of preventative complementary meds to keep my immune system at its best.
I believe being on biological meds is also helpful in either preventing or treating covid, although I am informed to stop it if I get an infection. I've had covid three times now but its effects are definitely getting lessening than the initial time I caught it.
It is totally understandable that you are worried about it given your mum passed away with it, of which I am so sorry for and your husband was really poorly, so do what you feel is right for you.
I would occasionally still wear a mask on an aeroplane as everyone's germs circle around the plane but generally I take on guard and oregano doterra essential oils as well as the supplements to give me some extra protection if I know I'm going into a potentially risky environmental place. However, it wouldn't prevent me from enjoying myself. I have great FOMO and enjoy inclusivity. Exposure to the outside world does help our immunity as well as many other factors.
I think our level of vibration and thought process has a bearing on how our bodies work and respond to environmental attacks so maybe try taking something that you know will help boost you if you want to start socialising more, so in your mind you know you have a certain level of protection, but you have to be comfortable with it. Remember, baby steps.
Take care and I hope some of the information on here has helped you. x
Dear WD thank you so much for your reply. I intend to look into the supplements you mention. Glad to hear your experiences with Covid are becoming less severe. All the best
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Sorry I’ve been quiet!!
What a terrible night ! Terrible 2 weeks actually. Support or a kind word from a fellow sufferer would would be lovely. 🌸
Living with rheumatoid 
Gay day, I think not.
Blood test
