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Moved to new retirement flat - now exhausted due to PEM

mermaid

Senior Member
Messages
714
Location
UK
I've had a very bad week and am on the bed can hardly move and in a lot of pain .
Yesturday things came to a head and I just thought I really can't cope and need more help .I contacted the mental health team and have asked my care co ordinator to contact social work team to assess.me for care / housing - I'm considering sheltered housing . I did have an assessment in April but shunned the idea .
I had to get rid of the home help recently as it was causing problems in the shared hosting I live in .
I need more input and for things to be made easier for me. Im not well enough to go through homelessness and try and battle the whole system .

How are you doing now @Emmarose47 That sounds a lot to cope with. I hope you get some more support by the direction you have taken. Is it likely to be a long wait for the assessment? I know that the social work teams are not well staffed, though maybe it varies depending on where you are.

My middle son has multiple severe mental health issues, and it feels as if he has been abandoned. He now has no social worker (except when he's reassessed I suppose), and the Community Mental Health Team have discharged him against his wishes, to his GP. On the plus side he does currently get 28 hrs of support via Direct Payments, but I worry that they will take that away if he's reassessed and not seen as being in need. Without that help and support he would fall apart I think.
 

Emmarose47

Senior Member
Messages
2,127
Location
UK
How are you doing now @Emmarose47 That sounds a lot to cope with. I hope you get some more support by the direction you have taken. Is it likely to be a long wait for the assessment? I know that the social work teams are not well staffed, though maybe it varies depending on where you are.

My middle son has multiple severe mental health issues, and it feels as if he has been abandoned. He now has no social worker (except when he's reassessed I suppose), and the Community Mental Health Team have discharged him against his wishes, to his GP. On the plus side he does currently get 28 hrs of support via Direct Payments, but I worry that they will take that away if he's reassessed and not seen as being in need. Without that help and support he would fall apart I think.
Hi mermaid
Yes the systems arnt what the used to be are they with such high demand and less people training for the posts ..
Where before people would get assigned a social worker now it's often assessment and close case .
Good to hear your son has the support at least for now . ..

I realised I don't fit into extra care housing and so with the advocate pushing for more priority on the housing ladder . Not sure if social services are going to reassess me completely or are just giving me bits of service .
What I'm finding is social services say ' we don't get involved in housing , and housing say contact social services ...

Today I just feel numb and am taking it gently ..
Need to stay grateful for what I do have and today I'm not in bad physical pain 😊

Are u in the UK mermaid ?
 

lenora

Senior Member
Messages
4,926
Hello ladies....@Mermaid, @Emmarose47and @brenda. You certainly have your hands full of problems at the moment...and I hope it doesn't take long to work everything out. (Who am I kidding?)

Are meals included in the housing you're talking about? It would certainly save a lot of effort if you only had to get snacks and perhaps breakfast food, wouldn't it?

Brenda, I was bedridden for three attacks of shingles one right after the other. People have no idea how wretched these illnesses can be (my fourth attack....I was much younger and the first wasn't as bad, but neither was it comfortable). Funny thing is that a lot of doctors don't even recognize them. You're probably better off with either a GP or neurologist to receive a diagnosis.

@brenda....you need a good long rest after what you've been through. That's a heavy blow for anyone to fight off. I hope you have good friends. I'm sorry about your daughter.

@Emmarose47.....You seem to know your way around the system quite well. Having been a nurse helps, I'm sure, and I hope it pays off for you. It's so easy for us to overdo things....and there are days when we do that just by waking up.

@mermaid.....I know you'll be glad to get your shelves in and then really be able to settle into your new "digs." How about meals in your case? I dealt with family members who had bipolar illness and it certainly wasn't easy. Impossible, one may say. It takes a lot of energy and it's hard to make decisions. Here it seems that all of the rights are on the patient's side.....definitely not good.

Yes, scents are a problem and after shingles I had to get to really basic thinking. Ivory soap was it....bathing, washing my hair, laundry (and washing it twice) as everything caused a reaction. We use an organic laundry detergent now, and make certain that clothes are rinsed twice. If only people knew that those lovely scents were really just a combo of chemicals! Anyway, I do hope you'll all settle in & have better health. Yours, Lenora
 
Last edited by a moderator:

brenda

Senior Member
Messages
2,270
Location
UK
Hello again @brenda , and sorry for the delay in replying. You wrote this about 2 weeks ago, so you only have 2 weeks before your move. Your place does sound similar to the one I am in, as there are people here who are very disabled, (one woman with MS looks similar age, but much more disabled than I am), and some who are relatively fit.

Thinking of you as you get ready for your move, as it's a big strain for sure, and now I am at the other end, yes, I think my adrenals are crashing badly too now and I don't really know what to do about it, other than try to rest I guess. I am only going out about once a week (at most twice), so I am not exactly living it up in the London nightlife.

How lovely that the warden arranged that coffee morning for you to meet other people in the sheltered housing place.

I am so sorry to hear what you have been through with regard to your daughter's death and the shingles. Very hard on top of having ME issues.

I did a lot of support work from afar with my middle son who has schizophrenia, and had DWP issues and it came after my mother and husband's death, so not surprising I am exhausted really.

I think having Covid (albeit mildly) in Dec 2020 has affected my ME for the worse, as I really didn't have brain fog or the energy loss I am now experiencing. Unfortunately it's affecting my mental health too - the lower my energy falls the more depressed I feel. It feels like wading through treacle.

@mermaid thanks and yes two weeks to go and it has been a nightmare trying to sort the flooring out. It has even made me wonder if I am making a mistake. I am having Marmoleum Click fitted which are sort of like laminate but with a chemical free vynyl. However, the colour I want is out of stock till mid September EVERYWHERE so I have to move in without flooring.

It is a huge decision to go into sheltered housing and have to get rid of so much of your stuff. I am attached to my German built washing machine which will last forever but it has to go. I just hope it will not be a mistake. The coffee morning was a lovely thing to do - yes and shows how kind the warden is. She has been lovely.

I do hope you will soon improve from the crashing and will continue to pray for you. Anything on top of ME is hard isn't it and you have had your share. Especially being carer for your mentally ill son. That is tough and I feel for you having supported mentally ill family members before.

My health is going downhill and I am having a huge loss of hair. But my energy levels are staying okay due no doubt to adrenaline. Another good thing is that removals are being paid for by welfare assist and they will give me the money to get a fridge-freezer as I have separate units and they won't fit into the kitchen which is very small. I have thrown a lot of stuff out and have recognized that I am a hoarder!

Please take care of yourself and make sure you are getting the nutrients needed for healing.
 

brenda

Senior Member
Messages
2,270
Location
UK
Hello ladies....@Mermaid, @Emmarose47and @brenda. You certainly have your hands full of problems at the moment...and I hope it doesn't take long to work everything out. (Who am I kidding?)

Are meals included in the housing you're talking about? It would certainly save a lot of effort if you only had to get snacks and perhaps breakfast food, wouldn't it?

Brenda, I was bedridden for three attacks of shingles one right after the other. People have no idea how wretched these illnesses can be (my fourth attack....I was much younger and the first wasn't as bad, but neither was it comfortable). Funny thing is that a lot of doctors don't even recognize them. You're probably better off with either a GP or neurologist to receive a diagnosis.

@brenda....you need a good long rest after what you've been through. That's a heavy blow for anyone to fight off. I hope you have good friends. I'm sorry about your daughter.

@Emmarose47.....You seem to know your way around the system quite well. Having been a nurse helps, I'm sure, and I hope it pays off for you. It's so easy for us to overdo things....and there are days when we do that just by waking up.

@mermaid.....I know you'll be glad to get your shelves in and then really be able to settle into your new "digs." How about meals in your case? I dealt with family members who had bipolar illness and it certainly wasn't easy. Impossible, one may say. It takes a lot of energy and it's hard to make decisions. Here it seems that all of the rights are on the patient's side.....definitely not good.

Yes, scents are a problem and after shingles I had to get to really basic thinking. Ivory soap was it....bathing, washing my hair, laundry (and washing it twice) as everything caused a reaction. We use an organic laundry detergent now, and make certain that clothes are rinsed twice. If only people knew that those lovely scents were really just a combo of chemicals! Anyway, I do hope you'll all settle in & have better health. Yours, Lenora

Thanks @lenora, no friends to speak of, and meals are not provided, you make them all yourself and there are no shops nearby - a short bus journey is needed, but the upside is it is really quiet there. Horrific that you had four bouts of shingles . During my first bout, I heard about a sufferer who used frequencies to get rid of it so I did the same and it did lessen it I think but can't know for sure. Then a month later it started again in my eye so out came my generator and it got rid of it this time. My GP wanted me to come to the surgery to diagnose the shingles but I did not dare drive so went to my local pharmacy and asked the pharamacist and he said he recognized it as soon as I opened the door (in my eye)

I did not smell chemicals much in the laundry but my condition has improved a lot, though I don't take chances. I am sure that eating organic has helped.
 

mermaid

Senior Member
Messages
714
Location
UK
Hi mermaid
Yes the systems arnt what the used to be are they with such high demand and less people training for the posts ..
Where before people would get assigned a social worker now it's often assessment and close case .
Good to hear your son has the support at least for now . ..

I realised I don't fit into extra care housing and so with the advocate pushing for more priority on the housing ladder . Not sure if social services are going to reassess me completely or are just giving me bits of service .
What I'm finding is social services say ' we don't get involved in housing , and housing say contact social services ...

Today I just feel numb and am taking it gently ..
Need to stay grateful for what I do have and today I'm not in bad physical pain 😊

Are u in the UK mermaid ?

Hi again @Emmarose47 yes, I am in the UK. I have recently moved from Cornwall to Greater London, so it's been a big change in my life and I am feeling quite lonely at times. I realise that when my energy is especially low that my mood dips immediately, and I begin to feel depressed.

Good to hear that your physical pain has receded somewhat. I think you said that you share your living accommodation? How are your fellow sharers towards you re your limitations?

Sounds like a lot of buck passing between social services and the housing people going on for you, with no one wanting to help. Would an organisation like Shelter be able to advise and help? I expect you have already explored all options

My son lives facing a large Asda carpark in a south facing flat which gets very hot in the summer, so the noise from the car park is worse as he needs to open his windows. He has had the additional issue of a difficult neighbour for 12 years who has at times made his life a misery. I have advocated for him as much as possible in the past, but my ability to help him due to my own issues has reduced. Thankfully the neighbour has moved out, and he now says that he is going to stay where he is. At least it's a Housing Association flat, so he is lucky to have that.

PS Just read back a previous post, and I see that you mention Brighton. This is where I grew up! Well it was Hove, in fact, but I did also live in Brighton for a while after I married. I moved away in 1975, but my mother was still alive in Hove until 2019 so I visited her when I could, (a long trip from Cornwall so I only managed it once a year), and then recently when I sold my house in Cornwall, I lived in Hove with my sister in law and brother in law for 6 weeks, so went into Brighton for a visit. Unfortunately I was suffering from exhaustion after the move, so it took a long time to build up the strength to get there.

I even went on a day trip to Brighton by coach with the retirement flat just after moving here, and met up with an old friend for lunch.

Which part of Brighton did you live in? I presume that you are not in Brighton now?
 
Last edited:

mermaid

Senior Member
Messages
714
Location
UK
Hello ladies....@Mermaid, @Emmarose47and @brenda. You certainly have your hands full of problems at the moment...and I hope it doesn't take long to work everything out. (Who am I kidding?)

Are meals included in the housing you're talking about? It would certainly save a lot of effort if you only had to get snacks and perhaps breakfast food, wouldn't it?

Brenda, I was bedridden for three attacks of shingles one right after the other. People have no idea how wretched these illnesses can be (my fourth attack....I was much younger and the first wasn't as bad, but neither was it comfortable). Funny thing is that a lot of doctors don't even recognize them. You're probably better off with either a GP or neurologist to receive a diagnosis.

@brenda....you need a good long rest after what you've been through. That's a heavy blow for anyone to fight off. I hope you have good friends. I'm sorry about your daughter.

@Emmarose47.....You seem to know your way around the system quite well. Having been a nurse helps, I'm sure, and I hope it pays off for you. It's so easy for us to overdo things....and there are days when we do that just by waking up.

@mermaid.....I know you'll be glad to get your shelves in and then really be able to settle into your new "digs." How about meals in your case? I dealt with family members who had bipolar illness and it certainly wasn't easy. Impossible, one may say. It takes a lot of energy and it's hard to make decisions. Here it seems that all of the rights are on the patient's side.....definitely not good.

Yes, scents are a problem and after shingles I had to get to really basic thinking. Ivory soap was it....bathing, washing my hair, laundry (and washing it twice) as everything caused a reaction. We use an organic laundry detergent now, and make certain that clothes are rinsed twice. If only people knew that those lovely scents were really just a combo of chemicals! Anyway, I do hope you'll all settle in & have better health. Yours, Lenora

Hello @lenora
Thank you for your kind words!
I know that some retirement flats do provide a main meal, but if you have food intolerances then that comes with its own problems. I knew one person in one that did provide, in Cornwall and the meal wasn't optional, and it was at lunchtime, so if she went out, it rather split the day up for her.

I would rather cook for myself really as I like to eat organic food and avoid certain foods. As it is, the place does have tea and coffee mornings, and inevitably biscuits and cakes, and the kind of tea that I don't drink. They also have other food related events that I tend to avoid, or bring my own.

Yes, hopefully most of the shelves will be going in next Saturday, so that will make a big difference in the sitting room.

Luckily I seem to have sorted out a reasonable compromise over the washing scents that I can cope with, without having too much wet washing draped around. It seems that the scent is coming from the dryers and not the washing machines, so as long as I dry the clothes that go near my face, and the sheets in my own flat on dryers, I can cope with this. Luckily the shower is large and I can stand a dryer inside it, and another one in the bathroom.

With regard to your shingles....my mother said that it was the worst illness that she ever had, very painful and debilitating, and to get 3 attacks must have been dreadful as I know it takes weeks/months to go. I know that there is a vaccine now that they give the over 75s for shingles as I guess the risk is higher.
 

mermaid

Senior Member
Messages
714
Location
UK
@mermaid thanks and yes two weeks to go and it has been a nightmare trying to sort the flooring out. It has even made me wonder if I am making a mistake. I am having Marmoleum Click fitted which are sort of like laminate but with a chemical free vynyl. However, the colour I want is out of stock till mid September EVERYWHERE so I have to move in without flooring.

It is a huge decision to go into sheltered housing and have to get rid of so much of your stuff. I am attached to my German built washing machine which will last forever but it has to go. I just hope it will not be a mistake. The coffee morning was a lovely thing to do - yes and shows how kind the warden is. She has been lovely.

I do hope you will soon improve from the crashing and will continue to pray for you. Anything on top of ME is hard isn't it and you have had your share. Especially being carer for your mentally ill son. That is tough and I feel for you having supported mentally ill family members before.

My health is going downhill and I am having a huge loss of hair. But my energy levels are staying okay due no doubt to adrenaline. Another good thing is that removals are being paid for by welfare assist and they will give me the money to get a fridge-freezer as I have separate units and they won't fit into the kitchen which is very small. I have thrown a lot of stuff out and have recognized that I am a hoarder!

Please take care of yourself and make sure you are getting the nutrients needed for healing.

@brenda.... I feel for you re the flooring and all of the other stresses of moving. I consider that I was so lucky to have the 6 weeks break with my sister in law so the legal stuff re the flat could be completed, and then the painting and flooring sorted out.

Yes, parting with old friends, be they washing machines, is a wrench. If my own experience is anything to go by, the washing machines are OK there re smell, but avoid the dryers as it seems it is those that impart the worst smells.

I looked at the possibility of moving into a Housing Association flat instead of buying one (mine is via Churchill), and it would have meant a long wait, plus the rooms were much smaller. I was impressed with myself, with no car, and living on top of a hill getting rid of stuff, but I did it over months not weeks. I also didn't reduce as much as I should and have brought half of my craft stuff, thinking that I might be more sedentary if the health dip continues.

How are you managing to get rid of things? Charities? It's a mammoth issue especially if you are doing it quickly. I used a local Facebook group to offer things for free, but even that took energy, as my house was hard to find and I had to send full directions to people. Happily I didn't bring any excess furniture, as I measured up well, but the boxes of 'stuff' were a lot. Not sure I would have considered myself a hoarder, but I did inherit things from my mum and husband only a couple of years ago, and am only slowly parting with some of them.

I didn't have the problem of getting rid of a washing machine or fridge/freezer luckily as the person buying was happy for me to leave them. Here I have a small kitchen, (with washing machine in the laundry), with a fridge and freezer and cooker installed.

I rather fear that I have been kept going on adrenaline for months, and certainly while I did my removals, so no wonder I am struggling now. I have only been going out once or twice a week here as too exhausted to do otherwise. I did manage a lovely trip yesterday to a co-operative lavender farm (well it's actually part of an allotment) where I could pick a large bunch, and also visit some lavender based stalls. It was very peaceful and enjoyable, though the bus trip was a bit stressful as I didn't know how to get there, but thankfully I met someone who was going in the same direction, and I got home fairly easily.

I am sorry about your loss of hair and downhill health. My hair is very thin now, but it's been going on a long time.

Thank you for your kind supportive comments. I am eating well - food means a lot to me! Not all of it is ideal, but I have an organic veg/fruit/meat/fish delivery each week here from Abel and Cole, and Ocado once a fortnight. I spend more on food than most as I feel it's important. I also take many supplements, but feel that I need something for my adrenals, and not sure there is an easy fix there (have tried various last year, but nothing seemed to make any difference). I had a test years ago via Dr Myhill and had the lowest score on Carnitine she had ever had, but wasn't able to tolerate the supplements. I am going to try it again, as I eat less red meat now, and it's in red meat. I had a 2nd test and I had improved but it was a long time ago.

I have herbs via a medical herbalist, (expensive) but am also thinking of paying out for functional medicine, as I have savings via an inheritance, and this is the worst I have been re ME for many years. I am looking at the list that Dr Myhill provides (Natural Health Worldwide) and trying to decide who to go for. On the plus side, I have improved hugely on 2 fronts over years - as long as I am careful, my digestion is good, and also my immune system feels a lot stronger, as I don't tend to get the odd reactions (sore throats etc) that I once did.
 

brenda

Senior Member
Messages
2,270
Location
UK
Hi @mermaid This is so lovely having someone going through a similar thing a few steps ahead of me :)

It has been very hard to get rid of things but had already started a few months ago by taking things to charity shops. I am going to have to give larger things away that are advertised but not getting much interest, which will deprive me of much needed funds but well, at least some will get help they need from an Age UK furniture shop. I too have a lot of boxes filled with books especially but the new flat is not too bad in size compared to others. Mine is the biggest in the building with a 23 sq m living room. It is my kitchen equipment that is going to be a problem as I have also been stockpiling food.

So lovely that you had a nice day out yesterday! It sounds very nice there. There are allotments near my new home but I doubt whether I will ever have the energy to maybe share one. Food is very important to me too, and I eat as much organic as possible, shopping at A and C and Ocado. There is also a small organic store locally which I will probably lose which is a shame as they have been so good. I buy my meat online from an organic farmer who slaughters the same day as he sends out his orders to high histamine customers.

I have met Sarah Myhill as she was chosen by my solicitor to do a report on the health of the family after a pesticide exposure case we failed to win.

I had a very big improvement with my MCS due to avoidance but he last few years have not been great due to covid x 2 and shingles in the eye but I battle on!
 

lenora

Senior Member
Messages
4,926
Hello @mermaid. I'm glad that you're almost settled in. The shelves will make a big difference.

Yes, years ago one of my daughters developed allergies with a rather severe rash. I took her to her pediatrician and he said the worst offenders are often fabric softeners, especially the ones with the cute teddy bear on the front. I'm sorry, but I don't remember the name of the product. I used a small l/4 sheet but stopped that and hung her clothes outside. Voila! He was so right, and it took no time at all to find the culprit.

I'm sure you're right, those fabric softeners do give off an overpowering odor. I now use the wool balls and they're just fine. Not only that, they can be washed and also work as a replacement fabric softener.

Umm...lavender. I always associate that with England perhaps b/c so many of your products (perfumes, etc.) contain the scent. We use it when possible (which is not often). It always smells so good & fresh. It sounds like you had a lovely outing and I'm glad.

We're very careful about the food we eat, also. I'm sure you take your own tea with you....it's just nice to meet new people who can help you settle in (as per the lady on the bus).

Shingles....even now all these years later, I can barely say the name. I know the vaccine here is available for those willing to pay approx. $300 at age 50. Although, thinking about both my daughter and son-in-law had insurance pay their cost. I would highly recommend it to people, although ask your Dr. first. I say that, but none of mine could decide whether or not I should get it (I have another problem whereby I develop cysts inside the spinal cord itself). I finally decided to do it on my own and had no reaction from both of the vaccines. I just hope it lives up to its billing. @brenda....perhaps you'll also be interested as it's 95% effective for life. More than that we can't expect.

The antivirals now help hasten things along, but they hadn't been discovered (or used) at the time I had them. Your eye is a terrible place to get them....and you can so easily spread the illness. I blame my terrible state of anxiety on that outbreak although I've had controlled attacks beforehand. Fortunately, I have several very understanding doctors. Thankfully!!

I hope both of you will settle in well. Funny, mentally I parted with a number of things years ago. I look at them as possessions, that's all. Certain things like those from my family (and I have very few of) or my husband would be hard to part with. The rest can be carried away and it just wouldn't matter. My backyard and back porch would be sorely missed....that's it.

You've both had big losses, now it's time for a good respite and some peace. Yours, Lenora
 

Emmarose47

Senior Member
Messages
2,127
Location
UK
Hi again @Emmarose47 yes, I am in the UK. I have recently moved from Cornwall to Greater London, so it's been a big change in my life and I am feeling quite lonely at times. I realise that when my energy is especially low that my mood dips immediately, and I begin to feel depressed.

Good to hear that your physical pain has receded somewhat. I think you said that you share your living accommodation? How are your fellow sharers towards you re your limitations?

Sounds like a lot of buck passing between social services and the housing people going on for you, with no one wanting to help. Would an organisation like Shelter be able to advise and help? I expect you have already explored all options

My son lives facing a large Asda carpark in a south facing flat which gets very hot in the summer, so the noise from the car park is worse as he needs to open his windows. He has had the additional issue of a difficult neighbour for 12 years who has at times made his life a misery. I have advocated for him as much as possible in the past, but my ability to help him due to my own issues has reduced. Thankfully the neighbour has moved out, and he now says that he is going to stay where he is. At least it's a Housing Association flat, so he is lucky to have that.

PS Just read back a previous post, and I see that you mention Brighton. This is where I grew up! Well it was Hove, in fact, but I did also live in Brighton for a while after I married. I moved away in 1975, but my mother was still alive in Hove until 2019 so I visited her when I could, (a long trip from Cornwall so I only managed it once a year), and then recently when I sold my house in Cornwall, I lived in Hove with my sister in law and brother in law for 6 weeks, so went into Brighton for a visit. Unfortunately I was suffering from exhaustion after the move, so it took a long time to build up the strength to get there.

I even went on a day trip to Brighton by coach with the retirement flat just after moving here, and met up with an old friend for lunch.

Which part of Brighton did you live in? I presume that you are not in Brighton now?
Hi mermaid
It's hard and the reason I need to leave this house now ...
I have a good advocate , local councillors office and a housing charity worker so it's as good as it could be I think .
Is your son in London ?
Ah yes Brighton ! Lived there for 8 yrs and left to come to Bristol in 2006 . I firstly had a flat at Buckingham street NR the station and then lived in a penthouse at Lewes Crescent .
It's a fab place and I miss it .
Bristol has been good to me though too
Ah life moves on hey ...
How is London ...at least your not house bound !!
 

brenda

Senior Member
Messages
2,270
Location
UK
@brenda....perhaps you'll also be interested as it's 95% effective for life. More than that we can't expect.

The antivirals now help hasten things along, but they hadn't been discovered (or used) at the time I had them. Your eye is a terrible place to get them....and you can so easily spread the illness. I blame my terrible state of anxiety on that outbreak although I've had controlled attacks beforehand. Fortunately, I have several very understanding doctors. Thankfully!!

I hope both of you will settle in well. Funny, mentally I parted with a number of things years ago. I look at them as possessions, that's all. Certain things like those from my family (and I have very few of) or my husband would be hard to part with. The rest can be carried away and it just wouldn't matter. My backyard and back porch would be sorely missed....that's it.

You've both had big losses, now it's time for a good respite and some peace. Yours, Lenora

Thankyou for your kind words Lenora. I won't take any vaccine. The adjuvants would do a number on me apart from any negative affect on my immune system. I have been on shingles forums and people say that they have still been badly affected even after the vaccine. Some poor souls have regular outbreaks of the virus for the rest of their lives. I may have been heading for that myself as a month after the first one, the symptoms began again till I used my frequency generator and it seems to have ended it for good as it is more than a year now.

Taking an amino acid - lysine I think has helped some and sticking to a strict diet as well which is low in the one that causes problems. Can't remember which one. Pears are good I remember. Yes the eye is the worst place to have it. I couldn't believe the pain and had to clutch a frozen facecloth to my face to ease it as I cannot take pain killers. I found a homeopathic remedy in pills and one in a cream base for my forehead that helped. Goodness! I had forgotten how bad it was! I took some photos of myself at the time and they are horrific!

Pleased to hear you had understanding docs though. After speaking to mine on the phone after the pharmacist gave the diagnosis I was ordered immediately to the eye hospital but could not manage to go in an ambulance for four days when I could have lost my sight. I didn't, thank God and had to stop taking the medication I was given and the eye drops due to side affects. As the medical profession could do nothing for me, I did what I could with natural remedies and although there is a lasting affect to my sight in that eye, it is not too bad. The anti-viral did not do much good though I was on a high dose and was very bad for me I think. Garlic did more to help.

It's funny how I get attached to washing machines! This one is special though.
 

lenora

Senior Member
Messages
4,926
Hello @brenda.....I'm sorry that vaccines don't agree with you. I always hold my breath and hope for the best. Thus far, I've been fortunate.

Yes, Lysine is a good remedy for things like cold sores and the shingles virus. Can you use the antivirals? I hope to never have another outbreak, but nothing would surprise me.

Yes, the ointments ordered by doctors and put together by compound pharmacies are often very helpful...and with shingles, anything is an improvement. Expensive, that's the big problem. Ice is a good remedy for pain relief of many different areas of the body. I have a love affair with the Ace ice packs b/c they don't freeze rock hard and are covered in a blue denim type fabric. I have them in multiple sizes & just wrap them in a tea cloth place them back in a freezer bag and re-freeze for another time. A sure fire way of deadening just about everything. I should say that's in a lot of people, others find heat best. Whatever works, works.

You were very fortunate that you didn't have more trouble with your eye....isn't it just an awful feeling though? My doctors are close for the most part, I'm most fortunate. My neurologist will always see me over his lunch hour, but I've been seeing him for about 35 years and he knows that if I call it's serious. I spent a year bedridden as a result of those outbreaks....scary business.

Yes, a friend of mine had an uncle who had continuous outbreaks of shingles. Poor man and there was absolutely nothing, not even ointments that could help. I think it was a blessing that he was in a coma...just one wave after the other.

I think we're all attached to a washer that has been in the family for a no. of years. Personally, some of those old ones (Maytag here) used to last so long. Too many bells and whistles on them today. I liked to dry my clothes on the clothes line until I realized they were being sprayed by pesticides courtesy of our very nice neighbor's landscape crew. Now I only use the dryer....who ever would have thought of such a thing.? I just happened to be out one day as I saw them spray and the cloud head towards my wash.

You've had a big job on your hands, as some of the other ladies have. I hope you're all able to really rest up and enjoy the fall weather and the holidays when they arrive. Take care and above all, stay healthy. Yours, Lenora
 

lenora

Senior Member
Messages
4,926
Hi mermaid
It's hard and the reason I need to leave this house now ...
I have a good advocate , local councillors office and a housing charity worker so it's as good as it could be I think .
Is your son in London ?
Ah yes Brighton ! Lived there for 8 yrs and left to come to Bristol in 2006 . I firstly had a flat at Buckingham street NR the station and then lived in a penthouse at Lewes Crescent .
It's a fab place and I miss it .
Bristol has been good to me though too
Ah life moves on hey ...
How is London ...at least your not house bound !!


I didn't know you lived in Bristol. My husband's late mother lived in Bath and we used to visit her quite frequently. Bristol was always taken in at least once. We know that entire area well....and rather miss our trips.

My daughter and her family recently had a European trip and visited Bath, a place where both of our girls often spent at least a few weeks in the summer. She said she had never been to the baths themselves (not true, of course(, but it gave her husband a children a chance to see them, also. Then it was back to London....where my mother was from until the war ended. We only have one nephew now still in England. He'll be here at the beginning of Sept. We're looking forward to the visit. Yours, Lenora
 

Emmarose47

Senior Member
Messages
2,127
Location
UK
Hi everyone
@mermaid @brenda
Thought I'd share my good news !
My wonderful advocate and I worked on pushing to get my health needs and situation further up the council / social housing ladder and we did it !!
They have backdated so anytime I could go on to bid and be no 1 !

I'm so pleased ....
Am so ready to settle down
 

brenda

Senior Member
Messages
2,270
Location
UK
So pleased for you @Emmarose47

I have had to delay my move by a week as the flooring had still not been sorted. I eventually decided that all l could do was paint the concrete floors with non toxic paint. An old friend /neighbour is being a great help. Yesterday l heard that overlap housing benefit had been denied because they had never heard of chemical sensitivity so a doctors letter was sent.

Have got rid of a lot of stuff and washer and futon to go to charity on Friday. I am shocked at how l have accumulated so much due l think to feeling depressed about living here. Just lost interest in it. So hoping l will be a lot happier where l am going. It has been a nightmare trying to sort things out with so much inefficiency around, like a thirty minute wait to get through to the council, and nobody knowing what they are doing. Getting through it at last.