Struggling to attend appointments.

Jemima37

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@Jemima37
I can only write a short note at this moment, but I am very very glad to hear from you.

I agree totally with Rebecca, who is a smart and sensible person, too.

You do NOT sound bad in any way, you sound like someone who does try very hard to do the very best you can do, and you are right to work at the things you are working at. Those ARE the most important ways to take care of yourself. You are truly doing very well, at very difficult things.
They can only be done slowly and in bits, like you are doing them. And they are important, and it is also important to protect yourself from any harms and additionasl upsets that you can. It is the best thing you can do, for your husband and children, as well as for you.

You do NOT sound selfish or a brat or any of those negative things. You sound like a very good person who has had a very difficult series of experiences. Your feelings sound well warranted and those are good decisions, you make, and they would be the right ones, not to go someplace that is not the best place for you to be.

I am very sorry about your uncle and how badly it makes you feel. But it isnt your fault. That he is sick, or that you are not the one caring for him. You should not be at his funeral. That sounds like the right decision to me, And that is not your fault either. I am so sorry for the grief you will feel, when that call comes. Do lean on your husband, and let us know how you are doing.

I am VERY sorry you got that awful and frightening notice, which you should not have gotten. Your overall health is what is important. You must prioritise, and your own doctor knows that too. They send the same notice to every one and i wish they didnt. It does not apply to everyone.

Rebecca's replies were so true and excellent. Read them as often as you want to.

I am so sorry you dont have others to turn to, who can understand , but we do care about you.
Thank you for taking the time to reply to me, it means a lot to me that thise with cfs take their time to reply to me.

Your advice is just what I needed, you and Rebecca have helped so much.

I was doing a bit better with my cfs and then 3 weeks ago we decided to buy 2 rabbits. It was an insentive to get me outside more and weve always kept rabbits but decided against replacing our old ones that passed until I was in a better place, even though hubby and the children care for them when I cant. Anyway, we got 2 and within 3 days 1 suddenly passes away from vhd2 that the breeder hadn't vaccinated him against. It was a week of a huge high to a huge upsetting low. He was ill for 2 days and I had to wait for that horrible call from the vet that he passed. It sounds stupid but I was so devastated. In now on an anxious wait to see if ny ither rabbit has it as it has a long incubation. It's been horrible and it flared up a crash and anxiety again. I'm doing a bit better today then I find our my uncle is suddenly worse and has a week or 2 to live. I'm now on that anxious wait again and it all feels a bit too much. I really wish I didnt have to find out right now as I have to wrap myself up in cotton wool, but that isnt life.

I've not seen my uncle in a few years and I rarely hear from my mum since we stopped seeing each other but she was the one who text telling me about his ill health so I guess she will when he passes so I'm dreading it. I've sent my love to her and to him via my mum.

I'm such a sensitive soul and dont cope with anything like this very well.

Thank you so much.

J
 

Shoshana

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Oh my, that is very hard, also, J.
To get the 2 rabbits and begin to care for them, (which was such a good decision)
and then, unexpectedly, have it become sad and stressful, and to have one get very ill and pass. That would hit me hard also. And now to be concerned if the other will have the same, and not knowing.

And yes, hearing tht news about your uncle, from your mum, when you haven't been able to see him of course, and your mum hadn't been caring for you and that is the only contact ...... it is definitely enough to upset many of us.
I wouldnt cope well with that, either. And yes, i would try to wrap myself, if i could, in bubble wrap, as much as possible, to preserve myself, but as you say, these awful stressors hit anyway, and we just have to cope the best we can, and ask for support, from those who DO want to give it, as you did coming here to share with us.

You do need to focus on trying to take care of yourself, as it will not help anyone else for you not to.
It is what you deserve, and what your husband and children deserve. Those are who you need to put first now. The others did not care well for you, so you need to focus now on putting yourself and your dear ones who are good to you, first.

Lets also remember the positive steps and strides you have been making. Those are important.
 

Wolfcub

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How are you @Jemima37 ?I am incredibly impressed with your inner strength and bravery through all the many difficulties you face. Your authenticity, your kind heart.....everything.

They keep an eye on us now and then, you know....the ones who love us and who we love -after they have left this world. So I am not telling you what you should believe, just letting you know what I have been shown.
They never ever stop loving us. So you have Spirit helpers. And try not to be afraid of them "going home". They go to a beautiful place where their love shines even more strongly.
And that includes the animals too.

My kindest thoughts sent your way. :heart:
 

Jemima37

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Thank you all for helping me with this. I'm still struggling with the worry to be honest. I'm a year overdue my smear test now. I'm 40 in 2 weeks, had 3 children so I'm panicking and anxiety running wild I cant attend my smear. They do them every 3 years in the UK.

I keep getting reminders telling me its vital I attend, adverts on TV with how common cervical cancer is, women I follow on Instagram saying so many get cervical cancer and die now because of ignoring smears. I'm now terrified it's more common than I thought. Do all women get pre cancerous cells at some point??? My sister did in her 20s and her GP said it was due to her promiscuous behaviour from age 13. Her friend had cervical cancer in her late teens due to the same behaviour. My auntie had more cancerous cells. I'm now worried sick it's more common than I thought and if by the time I can get to my smear I've had pre cancerous cells, they'll have spread and I will die. Anxiety is a bitch.

I've never been promiscuous. Been married 18 years, with him for 20 years. Too much info but we've not had sex since my last smear test due to CFS, and my smears gave always been fine. Yet I'm still anxious it's common and I need to recover from this major crash and agoraphobia and get in that doctors to get it done asap.

Any reassurance please? My poor minds racing with risks and how common this actually is.

Wolf cub and Soshana thank you for thinking of me. I appreciate it.
 
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Oh my dear. How horrible to have anxiety about this. I'm so sorry this anxiety has reared its ugly head again.

I do suggest that you call your very kind and understanding doctor, explain all of your worries, and let her reassure you. I'm sure that if your doctor was worried about your risk of an abnormal result, she'd push you to come in (something that she is not doing).

Do all women get pre cancerous cells at some point???
No, not at all! The statistics I've seen say that, out of the millions and millions of pap smears done each year only around 3-5% have an abnormal result. Of this small number of abnormal results, the majority are not due to cancer or precancerous cells, but some kind of infection or inflammation (in other words, conditions that aren't worrisome).

by the time I can get to my smear I've had pre cancerous cells, they'll have spread and I will die.
In the very very very unlikely scenario that precancerous cells are present, there are many treatment options.

As for you, you are managing the best you can with very difficult physical and mental health issues. And you are doing amazing, truly! So please be kind to yourself. You can work towards the goal of going to the doctor eventually (not ASAP), but please don't beat yourself up because you can't do it right now. And if one of those ads comes on TV, change the channel with my blessing!
 

Shoshana

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@Jemima37
I am glad to see you , :)

even though I am sorry that the anxiety spikes, as I know it does. :aghhh:

I agree with everything that @RebeccaRe said above.
:thumbsup::hug:

And it is worth trying to get a reply from your own doctor, about why you in particular, would probably be at extreme LOW risk for that.

I think that all of those past smears being negative is a big reason for very low risk.

Also, I believe as Rebecca said, that it is likely MUCH LESS common than all of those statements make it sound.
Notice how they publicize ALL illnesses that way, now?!!
Though people can get anything, I have not actually known anyone who got cervical cancer. Not that it cant happen, but I don't think it is common.
I myself, have many medical problems, but never had a positive smear or cervical cancer.

I also wonder if the people who actually get cervical cancer, maybe most of them, have never had a smear? I don't know.

In any case, I do know that agoraphobia and anxiety ARE real, and are so very difficult, I am sorry you have to suffer from them, in addition to the CFS/ME. (And likely partially the CFS causes or worsens them)
And it is valid and understandable that they are all, preventing you from doing things you want to do, including finding a different doctor from your last one to do a smear, to eventually have a smear, mostly to rest your mind.
I don't know if any online or home visit therapist could help you with any tiny steps on reducing those agoro. barriars with you.

We are thinking of you!
 
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Jemima37

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Thank you Rebecca and Shoshana

You're both right and I will arrange a telephone call with my gp soon.

I have agoraphobia and anxiety since what happened with my brother and extended family 7 years ago but its not been bad, I got out still, attended appointments etc but then when the cfs hit 3 year ago they hit even harder and its purely due to how fatigued I am, unable to stand for long etc as I'm sure I have POTS too so I became so anxious about just walking around feeling like that. Then the anxiety hit me even harder than ever. It was sad as I was almost over the trauma and back out living life 80% recovered from all the anxiety and trauma. I had therapy for a few years it helped somewhat but mostly just triggered me going over my past so my therapist agreed I'd done with therapy and it can re traumatisesome people. I've had therapy on and off since I was 19 due to a tough childhood and later the attack with my brother. It's not something right now I feel I can or want to go back to doing. I know without cfs I'd be out again fine, so it stems from the cfs 100%.

Anyway I just wanted to address the therapy thing as someone above suggested it.

Thank you for reassuring me ladies its helped so much. Thank you so much xxxx
 

Shoshana

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Thank you for the sharing and the response, @Jemima37
We understand, the therapy is not what you need, at this point, and you do know yourself and your entire experiences, much better than we do.

It is definitely true, i find for me too , that the severe CFS/ME symptoms, are the most limiting factor,
and in addition, the CFS adds much direct anxiety for us, on going out or doing anything, knowing how low our stamina will be, once out the door.

I will continue to hope for better treatments for severe CFS, for you and for me and for others.

:hug::hug::hug:
 
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I have agoraphobia and anxiety since what happened
I think there is more of this happening in our illness than we realize. This Sickness Behavior response, is powerful. The message is don't go out there and do that. Unlike other forms / versions of this, ours message is most of the time, sound. The bad thing DOES happen out there. Feeling awful, symptoms worsening from mental and emotional exertion, the price we pay for going to any appointment, or lunch, or make a phone call.

Its entirely understandable.
 

-Jessie-

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@Jemima37 I am hoping that this post can bring you (a little) relief...

I just turned 40 a little over a week ago. I have not had a smear/"female physical" done since fall of 2014, for various reasons. So that is almost 5 years. Here in the US, I believe that I was always told that it is needed every 2 or most likely 3 years?, unless there were any specific reasons previously found to schedule check-ups sooner for monitoring or treatments. I have been getting repeat notices to get my papsmear scheduled that keep telling me I am overdue.

I was at my new doctors office for an appointment 2 days ago... Purpose = having Thyroid problems and was just given a diagnosis of Hashimotos. (I only ended up at the doctor for this because my symptoms were severe enough that I had to go to the Emergency Room for them last spring). At the appointment I asked to have my papsmear/physical scheduled and told her that her office has been sending me notices that I need to schedule.

I was also feeling rushed and anxious by this deadline, and thought I needed to hurry up and get in for it. My doctor relieved my anxiety about the timeline by letting me know that they have recently changed it to every 5 years here. She was relaxed about it and not concerned, despite the notices I have been getting. She is booked out far, and I try very hard not to schedule appointments during the worst winter months, so we scheduled my physical for next April!

That will be 5 1\2 years, and my doctor is not concerned about that timing. *So please breath a little sigh of relief. ;) :D

**Of course, just because they have added time to the deadline, making it 5 years now instead of 3? here, that doesn't mean that we know For Sure that I am safe and healthy in that area until we do the next test- in 7 months.

It was a relief to find out that the pressure I was feeling to schedule that appointment and get it done shouldn't have been so intense. But when they keep sending their reminders, (I think they are just automatically set up to send them out until the cause for reminders is fulfilled), how do they expect us not to feel stressed and pressured by that when we are already struggling so much? :confused:

I hope that you will be able to eventually get your exam (with good results). I know from my own anxiety experiences, that you may finally feel So Much Relief to have done it and be able to stop feeling pressured and anxious about it.

I was feeling anxiety for awhile about getting to this last appointment. And even a couple of days before the appointment, (although I couldn't find full relief from the anxiety until the appointment was over and I could come back home and rest again), I kept reminding myself that soon it will be done and then I can finally stop being anxious about it. It helped to keep in mind that every day that appointment got closer, was also another day closer to relief from the anxiety of it.

I know the high price that I have to pay for pushing my energy envelope and overdoing it... It sucks! And a doctor's appointment is always overdoing it, for me. So how am I not supposed to get at least a little anxious about it when I know how hard it will be to get through, and to recover from afterwards?

Everything that I have to do when I leave my house puts me in PEM (Post Exertional Malaise). If I told someone that Everytime they walked out their front door, they couldn't walk back in their door without feeling pain like they had been beaten up by a gang of people & also have to spend days or weeks feeling sick and non functional, I bet they wouldn't feel too great or excited about going out just to do life's basics either.

I hope that you are able to find some relief from what you are dealing with. Hang in there!


*Edited to add: Oops! I did not see that @RebeccaRe had already mentioned the "5 year" update before I posted this. No rudeness or redundancy intended in this post with me overlooking that and posting the info as if it hadn't already been stated. :oops: :headslap: :hug:
 
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Jemima37

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Hi ladies.

I just thought I'd update I'm still struggling with the setback in my anxiety. I have some better days but recently hit a crash too so that's been hard.

I have been on Instagram and lately all I see are women saying get your smear, itll save your life ans its sent my anxiety wild. I haven't had a smear since the end of summer 2015. I was almost 36. My gp is aware of this of course and lmoes my circumstances. She said to my husband when I sent him in my place, that if I cant attend it I have to put it to the back of my mind and in time we will work on it but these stories on instagram saying I had pre cancerous cells and if you leave erm you'll die, a smear finds them early. Here they're every 3 years in the UK, I've never missed one and been having them since I was 22. Always on time. Too much info, I've not had sex in about 8 years. Yea that's embarrassing but ive had health and anxiety issues since 2012 after I was attacked. I have the agoraphobia, Cfs and anxiety these few years and been struggling to attend appointments. So this smear thing is scaring me what if I never get to one and if I ever do will it be too late. I shouldnt watch Instagram stories as these horror stories scare me. Most are girls much younger than me (I was 40 recently). I stupidly read the contraceptive pill increases the risk of cervical cancer. I take a very low dose 20mg one for heavy periods since 2012. It's worked wonders to improve my life and pain but now I'm scared what if since my last smear its caused cancer. Omg my brain is fried.

Sorry to update about this again. I feel ashamed and embarrassed I've been housebound for 2 years unable to attend my appointments. I hate myself for it and this fear I will never get back to them and have cancer scares me so much. I wish I could rationalise it but jeer in the UK there are so many scary adverts pj tv or people online, it's made me fear that are cancerous cells are common or something.

My husband has taken my daughter to a concert tonight ans I'm here alone with my mind racing with these thoughts.

I hope you're all well.
Jem xoxo
 

SlamDancin

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I am not a lady but I also get worsened anxiety and agoraphobia with PEM. They have been pretty much consistently in my life since well before I knew what ME was or the sickness response. Just wanted to agree that I think it is part of the illness and show solidarity with all of you who have the pleasure of experiencing these along with the usual symptoms.
 

SlamDancin

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I’d also like to get a few scans and blood tests, I have had these orders for months, but I haven’t done them because the anxiety of the experience will 100% cause PEM of some degree. I already know I will but I need to get my spinal situation figured out more clearly. It’s a sucky catch 22
 

Jemima37

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I am not a lady but I also get worsened anxiety and agoraphobia with PEM. They have been pretty much consistently in my life since well before I knew what ME was or the sickness response. Just wanted to agree that I think it is part of the illness and show solidarity with all of you who have the pleasure of experiencing these along with the usual symptoms.
Yes the actual appointments result in huge panic attacks and weeks of adrenaline beforehand that I crash so severely. It's now become a huge phobia to see a doctor. It's so hard.