Hit a (mental) wall

[kerryhannah]

I have AS and recently have had really bad hip pain. I have a 1 yr old and keep getting stuck in the floor and not being able to move without spasm / put weight on it etc. Rheumatology phoned me back this morning (great service- only emailed last night!) and said to go to the gp to check mobility and to get bloods taken.

I am discretionary shielding (Benepali, asthmatic and has pneumonia 4 times) so started to panic a bit before I went. This feeling of anxiety is something I have not had before so felt very strange and overwhelming in itself! I had a total breakdown at the gp and cried a lot. I asked for the antibody test with my bloods and she looked very blank. I thought the gov had said you could have them with any bloods being done? How wrong I was!

Also am a secondary school teacher and am dreading going back in September. GP’s response was “if you feel that way in September then don’t go back”... I’m just afraid it’s not that simple!

Anyway... just needed to get it all off my chest really. I’m struggling and it sucks!

[Pippy25]

Hello kerryhannah, firstly glad you have reached out and rant away all you like as sometimes we have to let it out. I think this situation has brought out feelings, emotions and stresses that even the strongest of people have been tried and tested with over these months. I'm glad that you got to go and have your bloods done, I too am due to go in just under a fortnight and if I'm honest I probably will feel the same. After all this time shielding it isn't easy taking those first steps out again and I know the first time I went out in the car for a little drive, while I felt ok about being out and saw that in all those weeks nothing physically had changed. The buildings, the park, my locallity were all the same, but I felt inside I had changed and as I drove by the supermarket, shops, cafes and pubs I felt nothing and no urge or longing to go to them...and still haven't. So I hear what you are saying, I have been to the local chip shop and the pharmacy last week....but know it will be little steps and will take time for me to adjust to what's comfortable for me. However I understand you are having to think about returning to work in September and as you say it's not as simple as a glib' Don't go back' and think your GP wasn't right in saying that to you. Have you spoken with your employer about your concerns, also perhaps a call to NRAS helpline may help see if they have any suggestions. Again it may need re emphasising to your GP that simply don't go back is not an option and is there anything they can do either in the interim before you return either in September or indeed if there is any alternative given your health. While we can't always know what everyone's circumstances and situation is, right now things feel so up in the air and it's good to be able to get things off your chest instead of letting it build up inside. Take care and sending some heartfelt wishes out to you x

[kerryhannah in reply to Pippy25]

Thank you so much for replying with such lovely words. My employer is being so good at the moment and there is no pressure from them (so far which is good). It’s so true what you mean about life going on but feeling like you yourself have changed. I’m going to see what the plans are from the school and how they are going to make things ‘covid safe’ and go from there...

[Hidden]

Hi kerryhannah you just get it all out. I totally understand your problems. Looking after a 1 year old puts strain on anybody mentally and physically without your condition. On top of all that Covid has made things so much more difficult. I need to return to work in September in a primary school and like you have no choice but yes I am concerned I feel we have been thrown to the wolves by the government. No PPE protection and now reduced or possibly no distancing from the children . Like you I would like an antibody test. I had my bloods done today and there were people in their 20s having the antibody tests. I asked one why and she said I’m a teacher and one of my class had Covid and another person said oh I lied to my gp and said I had symptoms so could get the test. I asked her what was her job her reply was oh I don’t work. Again a sign the system isn’t working. I’m not much help but I do understand. Maybe contact your clinic again and say your gp was no help. Hope you feel better quickly.

[Pippy25 in reply to Hidden]

Some sound advice. I used to work in education and they have got to get this right for all who work in schools and the children too. I really hope that in the few months left you are given the support you so rightly need to enable you to return to work. Although I do agree things are up in the air and appears to be lacking in clarity in different areas of work. It is so important we get this right for everyone and that things are in place before September. Take care x

[kerryhannah in reply to Hidden]

Thank you. It’s so frustrating that some GPs will do it and others won’t. I’m certainly not going to have one for the sake of it and pay privately.

It’s so hard to get your head around what it’ll be like in September. I’ve been good at not thinking too far ahead in order to not get overwhelmed but am having to think of childcare etc so it’s all feeling very real!

I have my scheduled rheumatology appointment next month so will see if they want more bloods and try and push for it again then.

[Hidden]

Hi Kerry so sorry your hip is causing you so much pain. It must be very hard with a one year old.

I can understand you getting a bit panicky at the docs, it's a scarey world at the moment.

I thought the GPS were doing the antibody test too although don't think the government thought about how the GPS would afford them all.

Is hip pain a symptom of AS? I have RA and it's in my back too and when it's bad I get pain in my groin. I swear it's my hip but always told it's my back.

If you're still feeling it's safe to go back to work in September I'm sure you're GP and Rheumy will support you. You could also go.off sick. I think there's going to be a lot of that.

Let us know how you get in and if the blood tests reveal anything.

Take care

Kiki

[Sheila_G]

Hi. I really feel for you. It must be so hard for you with your problems and having a 1 year old. Do you have any help during the day? I have been shielding for 15 weeks now and fully understand your anxiety about going out again. I can only suggest what friends have suggested to me, that you take baby steps. Take it slowly and build up before September. It doesn't sound like you are able to go back to work as you are just now. You might need to be signed off sick. x

[kerryhannah in reply to Sheila_G]

Yes my husband is also working from home so we do shared childcare. I’m starting to do a few things but going to the GP was definitely out of my comfort zone! I’ll see what direction the school take and go from there x

[Sheila_G in reply to Sheila_G]

All the best x

[Ali_H]

Hi Kerry,

My 1st thought is ‘have you had the pneumonia vaccine?’ It’s given every 5 years and you should qualify for it. I had it 4 years ago and it’s made a difference for me in the winter. I teach secondary SEND and was alway getting chesty with a leaning towards bronchitis and a couple of times went on to pneumonia.

I hope that helps.

All the best

Ali

[kerryhannah in reply to Ali_H]

Hello, yes I have had it so am topped up with that. I had it years ago and when I questioned about having it again 5 years later I was told I didn’t need it again. Needless to say... I got pneumonia again! Have now had it again so should be good for a while. It stopped me getting as many chest infections too. The last time I had an issue was late January which in hindsight could’ve been Covid? Who knows! x

[sylvi]

Hugs darling and rant all you like we are with you. It helps knowing we are here to listen to.xxx

[Hidden]

I get terrible hip pain with my AS. It's never been investigated despite asking my rheumy repeatedly why I get it. She just said they hadn't MRI'd that part of me so she didn't know!

I'd speak to NASS about the going back to work problem.

I also have a problem getting my jabs from the GP. Every year they tell me I'm not eligible for the flu jab. I had the pneumonia jab two years ago. I'm sure I'll have a battle to get it again in three years time!