Struggling to attend appointments.

[Jemima37]

I'm too tired to respond very coherently right now--I'm sorry if anything sounds garbled. I just wanted to send love, and couldn't wait until tomorrow.

Thank you for sharing with us. You are brave to share, and I'm proud that you could do it. I'm sorry you have gone through so much. You are working so hard right now.

I'm glad that you have such a nice husband and GP who understand you so well.


Listen to your doctor! Don't worry about the test. There is no need to be anxious about not getting it done right this minute. Don't push yourself far beyond your comfort zone if there is no big need. It can be a goal you can veeeeery slowly work towards. Likewise don't worry about eyes and teeth. Just keep brushing and flossing, and at some point in the future you'll be ready to go back. Mental health comes first right now.



Yes, go slow. Listen to your mind and your body and don't go beyond what you feel ready for. Is there someone who can help you with exposure therapy? There are a lot of stimuli in medical places that can be triggering--the smell of gloves, the crinkle of the paper, etc. A lot of things to slowly get acclimated to before going back so they don't trigger panic. But small steps add up over time. Take small steps, and never forget to celebrate your tiniest triumphs!


Amen! You have been through a lot. But keep pushing (gently and slowly). You're a strong person. We believe in you!

Thank you so much. Yoir reply has comforted me a lot and I appreciate you taking the time to reply to me when so tired. I know how hard it is.

Yes, when I do exposure therapy again, once my cfs is up to it fully, then hubby will be with me. He was my support last time I had to do it after the attack, or I just sis things alone. I will get back to it in time I guess.

Thank you again xoxo

 

[Jemima37]

I was just about to ask if you have a garden.
It is wonderful, that you have been out there a few times lately. The Springtime helps too, and the lovely weather we had the last couple of weeks.
Do you have flowers out there? And a garden seat?
I love to drink my coffee in the morning, outside. My legs tire easily and I ache, some days, but it is nice to sit on the wooden bench and hear the birds when my legs feel wobbly in the mornings (usually after about 30 minutes) And to be visited by a bird who befriended me over 2 years ago, to whom I always give a little treat.

A garden is a haven of reality and some peace. It is a lovely and safer part of the "outside world".

Thank you.

Yes, I've been in the garden a few times recently and wow the bright light was a shock Haha. I hadn't even been in my garden for 8 months, I was shocked. So recently go outside even if just for 2 minute or 2 but at the weekend hubby and I sat outside at our patio table. It was nice in the sunshine. We did a good 10 minutes or so. Sounds daft but I was proud Haha.

My legs are always fatigued in the mornings so I go slow until lunchtime then I manage to do more later in the day.

 

[Wolfcub]

at the weekend hubby and I sat outside at our patio table. It was nice in the sunshine. We did a good 10 minutes or so. Sounds daft but I was proud Haha.

Well that's not daft at all. Be proud. That's lovely

 

[andyguitar]

10 minutes will soon become 20 which will then extend to 30 and so on and so on.

 

[Shoshana]

Thinking of you today, @Jemima37

 

[Jemima37]

Thank you all.

I've been managing to go in the garden most days for a few minutes to see my rabbits. Managing to cook a meal now and again. Recently I've even been knitting but making sure I dont do too much or if I do I crash (I learned that the hard way).

Still out of breath after more than 10 minutes pottering about but that's slowly improving. My feet at night still go hot and red just across my toes. Had that symptom 18 months and GP said she had no idea what it was. They go all blotchy red just across my toes and very top of foot just below the toes, never spreads higher. Very rare it ever happens during the day, just an evening thing that began when my cfs got worse and weirdly when my anxiety got severe late 2017. The first time it happened my father in law was in hospital and almost died. I had such a bad panic attack that night, hubby was away all night and at the time I was struggling with the anxiety and cfs and I was terrified alone, and also scared we would lose him, and wham my feet went all hot and red across the toes. It doesnt go red or severely hot until I walk around, then once I sit down and have my legs up on a stool or the bed again the redness fades and skin goes normal again. It also waxes and wanes in severity, some weeks I barely notice it and its mild, other weeks it's bad. They'll feel warm before I stand up then wham it hits until I lie down again. I'm a medical mystery lol.

Anyway other than that I'm coping. Just having to pace every day. Still panicking a bit thr smear test as its 4 years in July since I last went. They've always been normal but beating myself up of course and having anxiety its not easy to not worry what if I'm leaving something but my GP has said to me on the phone that right now I cant attend due to my energy levels and agoraphobia/anxiety so to try not worry or beat myself up. I just worry will I ever get out attending appointments again. Anyway, no negative thinking! I have to switch those thoughts as soon as they come in or my anxiety runs wild lol.

One more thing, a few weeks ago I went out with hubby in the car. Just around our block. Then I asked if I could drive, I'd not driven in 2 years but I drove fine. Hubby filmed me and when my children received the video they were all so excited I went out and drove again. It was an emotional evening. The next day they bought me a card and gift. It had the most beautiful message inside, I cried. I'm so lucky to have such understanding family.

The next night hubby drove about 5 minutes from home to a small shop, it felt about 50 miles away and its the furthest I'd been from home in 14 months. I got out the car and went into the small shop with hubby, paid for my items at the self service checkout and hubby was amazed I went in with him. Again my kids were jumping for joy. They were so amazed to receive a snapchat from me in a shop. That weekend was bank holiday, they were out every evening with their friends at their houses so I took advantage as I felt less pressure trying to go out with just my hubby. I did feel anxious on the way home as I realised I'd been out a while, done a lot of walking around a shop and I get breathless just walking around my house, so I did feel anxious travelling back but I contained it and hubby didnt notice. At home I did have a little cry because for me to not entertain a shop in 14 months, not even leave my home for 14 months and to go on a car twice in 1 weekend, and into a shop, well it was a lovely feeling. I felt proud I didnf even feel anxious in the shop or on the way even though it felt far from home. This is why I know the agoraphobia isnt the true agoraphobia I suffered 6 years ago after I was attacked. It's now all due to the cfs and fear of how I will feel going our as I know my body doesnt cope with too much activity. It's just the health that's causing the anxiety going out and even though I felt fine socially going into a shop etc the anxiety kicked in coming home as I worried how I'd feel once home. If that makes sense. It was quiet reassuring really how I was fine entering a shop.

I gave my teens their shop treats I bought them and they were all so excited that night when they got home, hugging me and telling me they were proud. It made me so happy and it will spur me on to keep going.

This weekend my daughter has her friend over and I went into her room to say hello, again something I couldn't do because hiding away so poorly last year I admit I developed severe social anxiety. I couldn't see anyone but my own little family. CFS can really affect us in so many ways but I'm trying hard to get past them. I havent been out since other than in my garden but I'm totally fine with that because last year I didnr even go into my garden for 6 months because i was too unwell. Sorry for blowing my own trumpet but I thought I'd update my achievements.

Thank you all for your lovely advice. Sorry this update got so long Haha.

J

 

[andyguitar]

It would have to be a long update @Jemima37 you have come a very long way scince you started this thread. And it was'nt that long ago was it? Keep at it. You are certainly over the first few hurdles on your journey back to having a full life.

 

[Shoshana]

@Jemima37
It uplifted me to read your post, today.
What a nice surprise it is, to hear from you.

Thank you very much , for making it long enough to share that much with us!

That sounds like a lot of little accomplishments, that actually are huge, and we do comprehend that.

It takes so much effort and practice, on your part. It is very nice that your family is so supportive, too.
It is still a rough and challenging road, but it is very nice for us to hear about that progress of yours.

 

[Mary]

@Jemima37 - I was just reading about lithium orotate (low dose, 5 mg.) this morning and how helpful it can be in calming the brain, so when I saw your post wanted to suggest you might want to look into it - here's one article: https://selfhacked.com/blog/the-benefits-of-lithium/

From what I read, almost everyone with ME/CFS has problems with a glutamate/GABA imbalance, so things that help reduce excess glutamate and help promote GABA may be helpful, and lithium orotate (low dose) is one of those things. Other things that may help are vitamin C -scavenges excess glutamate, l-theanine - helps produce GABA, resveratrol - scavenges excess glutamate.

You have had a lot of trauma. EMDR might be helpful with this. It's a therapeutic technique used by counselors which is very effective for PTSD and all sorts of trauma. It works much more quickly than regular talk therapy alone, AND it produces lasting change. I did regular talk therapy alone for 20 years off and on for issues relating to childhood trauma, and it kept me afloat but didn't really do much. When I found EMDR, it started to change my life. It really is amazing. You can find more here: emdr.com - it's used by the VA for veterans, it's been used for hurricane survivors, rape victims, childhood abuse, etc.

 

[Shoshana]

I do take one of the things that @Mary mentioned.
L-theonine is said to be the relaxing component from tea, but does not have any of the caffeine.
I do find it helpful for relaxation.

 

[Jemima37]

@Jemima37 - I was just reading about lithium orotate (low dose, 5 mg.) this morning and how helpful it can be in calming the brain, so when I saw your post wanted to suggest you might want to look into it - here's one article: https://selfhacked.com/blog/the-benefits-of-lithium/

From what I read, almost everyone with ME/CFS has problems with a glutamate/GABA imbalance, so things that help reduce excess glutamate and help promote GABA may be helpful, and lithium orotate (low dose) is one of those things. Other things that may help are vitamin C -scavenges excess glutamate, l-theanine - helps produce GABA, resveratrol - scavenges excess glutamate.

You have had a lot of trauma. EMDR might be helpful with this. It's a therapeutic technique used by counselors which is very effective for PTSD and all sorts of trauma. It works much more quickly than regular talk therapy alone, AND it produces lasting change. I did regular talk therapy alone for 20 years off and on for issues relating to childhood trauma, and it kept me afloat but didn't really do much. When I found EMDR, it started to change my life. It really is amazing. You can find more here: emdr.com - it's used by the VA for veterans, it's been used for hurricane survivors, rape victims, childhood abuse, etc.

Thank you so much.

I'd love to do emdr but I was told it couldn't be used for multiple traumas only 1 event? Maybe it was misinformed.

I'd love to try it but currently cant get out to attend but that would be amazing to have. I did enquire about it but was told the above because I was attacked but also has childhood trauma it was all too much for emdr which I was so disappointed about

Thank you, I shall have a read.

J

 

[Jemima37]

I do take one of the things that @Mary mentioned.
L-theonine is said to be the relaxing component from tea, but does not have any of the caffeine.
I do find it helpful for relaxation.

Ah yes it's in green tea. I drink 2 cups if decaf green tea a day

 

[Jemima37]

@Jemima37
It uplifted me to read your post, today.
What a nice surprise it is, to hear from you.

Thank you very much , for making it long enough to share that much with us!

That sounds like a lot of little accomplishments, that actually are huge, and we do comprehend that.

It takes so much effort and practice, on your part. It is very nice that your family is so supportive, too.
It is still a rough and challenging road, but it is very nice for us to hear about that progress of yours.

Thank you so very much. You are very kind.

 

[Jemima37]

It would have to be a long update @Jemima37 you have come a very long way scince you started this thread. And it was'nt that long ago was it? Keep at it. You are certainly over the first few hurdles on your journey back to having a full life.

Thank you so much Andy. Much appreciated 😊

 

[Jemima37]

Hi all

Having a but of a wobble today. My husband spoke to my gp a few months ago, he went to see her for me as I wasnt up to it. Just to renew my medications and update her on how I was doing. Shes great although I'm sure she thinks hes buried me under the patio or something Haha. I probably look a complete idiot sending him in my place.

Anyway he told her my smear was overdue and she said not to worry etc as it cant be done at home and I cant get to them so to not stress right now. She wants my anxiety and depression to calm as last year I had s complete breakdown. I've said before everything got on top of me. I'd stayed strong for 5 year after my Nan died, my brother attacked me, my mum and sisters hurt me by turning their backs on me, then my son was bullied and became suicidal and wham my health issues began. All of that happened in the space of 3 years. I stayed strong for 2 years after it all ut wham last year I broke. I ended up shaking all day, 12 hour panic attacks, I lost weight, couldn't function at all and my cfs hit harder than ever. It's taken me about 16 months to start to slowly improve. I've been out a couple of times this year for a short drive, I can just about get into the garden once a day to see my pets, I'm now showering again, doing the washing of clothes, cooking dinner twice a week... I have to rest so much after each chore and I'm still badly fatigued but I'm trying to rebuild myself. I felt last year I broke into tiny pieces and I'm now learning to rebuild myself. I probably sound a complete fool lol.

Anyway, a few days ago a smear test reminder came from my actual doctors. I cried as it noted my last smear was 2 months away from 4 years ago. I broke down crying to hubby, as he had told my gp about my worries and she said they'd not send a reminder for the time being. This letter I know is routine but the wording of it frightened me. I've attended every 3 years on time, never had any bad results or issues. This letter stressed its vital I attend and it has triggered my health anxiety bad.

I've not been able to attend dentist, optician or my go for a couple of years almost due to all this hell I've been through. I suffered agoraphobia after I was attacked but then got out again, attended appointments again and life was getting better but since how bad the cfs has been and the breakdown last year I've struggled again. This letter has just terrified me that all women get abnormal smears maybe at some point, that why they're important as they can catch cells when they're pre cancerous if you go on time, so if I leave it and I do have them I could die by the time I do go. Nasty thoughts like that. My hubby said not all women have pre cancerous cells in their life time, he bets it's quite rare but I've been worrying how high that risk is. My sister had them but she was told it was due to her behaviour, she was very promiscuous as a teenager and had sex from age 14. My mum was always fine. I'm now 39, had 2 partners my whole life, sorry too much info. My smears have always been ok. I know this is also too much info but I've not had sex in years, well before my last smear test in late summer 2015 haha poor hubby (again sorry too much info but cfs and anxiety, I had enough on my plate, sex was the last thing on my mind lol). Hubby and u celebrate our 18th year wedding anniversary this Sunday, I dont knownwhy he loves and sticks by me but he does.

I have no mum to turn to, no close female friends with cfs or anxiety that would understand my situation. I have a couple of close friends but they dont have chronic health issues so I try not to discuss it much. Sorry I'm offloading here, I've just been crying my eyes out beating myself up about what I currently can't do, feeling I'm a terrible mother for neglecting myself 😥

J

 

[Jemima37]

Also recently I found out my Uncle (mums brother) has heart failure, hes only 67, all very sad. My mum is spending almost every day with him helping him, supporting him. He has children, wife, other siblings and I'm so glad he has all that support, he's a good man. He's had health problems over 10 years and my mums always been there for him giving him help. I'm not meaning to sound nasty but my mother abandoned me when I was attacked by her son and sufferers PTSD and when my cfs began she told me to just look after myself and left me to it. She resented me along with my sisters because I wouldn't forgive my brother after he attacked me, he attacked other people and it had destroyed my life.

I love my uncle and he will be the first person to die since my Nan passed in 2012. It's her birthday and anniversary of her death in the next couple of weeks so it's a raw time. I'm worried how I will be hearing that news hes passed. I sound selfish probably and I dont mean to but my son talks to my mum on the phone and he tells me how much she's always with my uncle and it kind of hurts. I'm used to not having a mum and of course my uncle is far worse off than I am, I'm devastated for him but I cant help but feel hurt she abandoned me when I was so unwell. I probably sound a brat saying that and I honestly dont mean to. She had never been a very supportive mum but I never expected her to treat me as bad as she did those few years before I stopped seeing her when I was unwell.

I keep praying ny uncle will recover but they've been told he doesnt have long. I feel so upset for him and of course for my mum. I've sent her a message I'm sorry and asked her to send my uncle my love. She thanked me. My husband will attend the funeral to represent our family, I of course couldn't attend due to my health issues, but my brother will be there and I cant be around him as it triggers my anxiety for obvious reasons, so I probably wouldn't be able to attend if I didnt have the CFS issue flare. I feel a terrible niece but I have to take care of myself.

Sorry I offloaded so much. I've told noone but my husband about this upset I feel.

J

 

[Rebeccare]

Having a but of a wobble today.

Wobbles happen to the best of us. But please have confidence that you will stop wobbling soon!

This letter I know is routine but the wording of it frightened me. I've attended every 3 years on time, never had any bad results or issues. This letter stressed its vital I attend and it has triggered my health anxiety bad.

Tear that letter into little bits and throw it away! Your doctor says it's fine to wait--believe her! In the States the current guidelines are for women to get screened every 5 years over the age of 30, so if you lived here there wouldn't even be an issue. Doctors are cautious creatures--if your doctor had a concern about delaying the test she would have said so.

These letters are aimed at people who don't monitor their health and never go to the doctor. That's why they use that kind of urgent language that spooked you so--they're trying to spook these people into getting off of their bums and getting a check-up. But you are being monitored by a doctor, you have had normal tests in the past, and you are at low risk (having multiple sexual partners is one of the big risk factors--you're good on that front).

neglecting myself

On the contrary! You are taking exemplary care of yourself! You are working so hard to overcome the agoraphobia, and you've made tremendous strides! You have so many physical and mental concerns that you just have to prioritize or you'd drive yourself up the wall. Thankfully the pap can be a low priority for now.

 

[Rebeccare]

I probably sound a brat saying that and I honestly dont mean to.

You don't! Your feelings make perfect sense. Your mother wasn't there for you at a time when you desperately needed her. Now that she's working so hard to care for your uncle, of course you would feel hurt. The contrast between the way she's treating him and the way she treated you must be incredibly painful to experience.

You are not a brat. You are somebody who needed love and support from the one person who should have given it unconditionally, but didn't. I can tell that you feel terrible for your uncle. But this is also bringing up a lot of strong (and justified) feelings about your mother and her reactions to your assault and your illness. It's okay to feel sad for yourself (and angry at your mother) while also feeling sad for your uncle.

 

[Jemima37]

You don't! Your feelings make perfect sense. Your mother wasn't there for you at a time when you desperately needed her. Now that she's working so hard to care for your uncle, of course you would feel hurt. The contrast between the way she's treating him and the way she treated you must be incredibly painful to experience.

You are not a brat. You are somebody who needed love and support from the one person who should have given it unconditionally, but didn't. I can tell that you feel terrible for your uncle. But this is also bringing up a lot of strong (and justified) feelings about your mother and her reactions to your assault and your illness. It's okay to feel sad for yourself (and angry at your mother) while also feeling sad for your uncle.

Rebecca

I honestly can't thank you enough for your reply. It made me cry again lol but in a good way. Thank you so much for your reassuring, caring reply. It means a lot to me.

Oh that's very reassuring they're every 5 years in the US, I had no idea about that. I thought they were more frequent over there. Thank you. My husband said he thought it was less regular there at my age so he was right.

It has brought up a lot of bad memories of how my mum hurt me. She broke my heart turning her back on me. The day I was attacked she never even rang to check if I was alive even though she knew my brother was chasing me in his car, it was heart breaking what she did to me. She allowed my sisters to abuse me after the attack with vicious messages and sided with them, she also rejected me when my health deteriorated and I bravely went to her and asked for support, her response was 'I would if I could' so cold. Our last discussion was when I said to her if my children were unwell with cfs I'd be calling them daily asking if they needed anything support, something from the shop, a cooked meal... her response was 'well maybe they wouldn't want you calling every day' I havent seen her since as for me it was the final curtain for us, and my therapist advised me to walk away for my own sanity. That was December 2017. It has been very painful and I was starting to accept it and move on but since the breakdown last year it's taken me time, but I am slowly healing with therapy of what my mum did, my brother etc but at times like this the pain does hit hard again. I am extremely independent though for it all, and have amazing family of my own, my husband and children are my rocks. I'm accepting not having extended family and ok with it, I'm no longer a victim and I rarely discuss it as it does trigger my anxiety. So I'm not meaning to sound a victim giving a bit of background in my posts.

Thank you for understanding and for making me feel less selfish.

J xoxo

 

[Shoshana]

@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.