I had my first Cardiology appointment today, and I have mixed feelings about how it went.
I got there in good time, and signed in at reception. The receptionists were lovely, and I didn't have to wait long before I was called through for an ECG. I had a great conversation about Game of Thrones with the nurse! I was quite tense, so it took three attempts for a decent reading but it didn't take long overall. Soon after this, I was called through for a blood pressure test just before I saw the consultant. If I remember right, my reading was 145/85, borderline high.
The actual appointment with the consultant took about 5 mins. He seemed pleasant enough and told me to take a seat.
He sat back in his chair, and the first question he asked was "so, what do you do? Do you work?" I didn't think that was very relevant, but I explained that I haven't been able to work for a few years due to how my medical conditions affect me (chronic pain, extreme fatigue etc) I also mentioned that the dizziness and faintness also contribute to me not working and that was the main reason for me seeing him today.
He then asked me to explain my main issues, that had led to the referral to him. I described to him the symptoms (dizziness, faintness, palpitations, I forgot to mention headaches and vision stuff though damnit) as well as when they occur (standing up or sitting up for a while), what makes them better (lying down, salty snacks, hydrating well) and worse (overheating, overexertion, eating high carb meals etc).
He only really wanted to focus on the dizziness and faintness. He asked if I'd been referred to an ENT specialist. I said I had and was due to see them for Vestibular tests next week. (You can read about my first ENT appointment here). He then asked if I ever had fainted and I said only once, 5 years ago, as far as I could recall. He also asked how long an episode of faintness lasts and I couldn't think so ended up saying "a minute?" even though it fluctuates and I could spend most of the day feeling dizzy and faint, I did make sure I said it is triggered by standing or sitting up for ages. He said "oh everyone gets a bit of giddiness then". I then told him it was way worse than that though and has contributed to me giving up work.
He said that my ECG was fine and in his opinion, he didn't think I had any heart problems, but he'd get an appointment booked for me to have 24hr heart rate monitor fitted. I was finding it hard to concentrate at that point and explained I was listening, but I was very dizzy. He made sure I understood what he said though and I said I did and the 24hr monitor sounded good. He wanted to end the appointment there but I stayed sitting and asked him if he would consider assessing me for POTS and order a tilt table test.
He said he didnt think I seemed like a POTS patient but he would see how the 24hr monitor goes first, so at least I have a chance at maybe having the test. In my opinion, he did seem like he'd made up his mind about me before I'd even walked through the door. And what does a POTS patient "seem" like anyway?
Going back to the consultant's first question, the answer I would've liked to have given goes something like this:
"So what do I do? I struggle to get through each day. I try to look after myself the best I can. When I can concentrate, I game or watch tv shows/movies, I reach out to friends online and do my best to be there for them through good times and bad. I try to enjoy life. I sometimes look for work online but when I really think about what my health allows me to do, working is just too much physically & mentally. So I try to keep up my hobbies & I try to help others in whatever way I can. But I guess that's not enough in this "work or die" society"
Overall, I suppose the appointment went reasonably well? At least he is willing to see me again (even if he does seem to have already made up his mind!), but what do you think? Have you had a similar experience? Please comment below!
Friday, 5 April 2019
Thursday, 4 April 2019
Some more Developments
This post is mostly another updates one, following on from the recent post; Updates and Some Worrying Family News
Nan
To recap, my Nan was in hospital after breaking her right Femur. She spent quite a bit of time in hospital after an operation to pin and plate her leg. She was then placed in a nursing home temporarily (quite far away from her home) to rehabilitate. The physios' aim was to get her to a point where she could mobilise enough to cope back at her Assisted Living flat. Unfortunately the nursing staff (physios, carers, nurses) came to realise that Nan had significant physical needs and was on the cusp of Dementia. She simply had too many needs for a general care package in her old flat. She would need to go into a care home.
Since then, social services have been involved and after a couple of assessments (with a cognitive assessment to be done this Friday), they have decided she needs to be in a Residential home with Dementia specialism. My parents, some of my uncles, and I have arranged to see a number of homes, to see what would be suitable.
My nan wants somewhere with semi rural views, a decent sized room (that she could put a recliner chair in), and a variety of meal choices that are freshly cooked. She did also want to view the homes before deciding which she would like to live in. Unfortunately, time constrictions mean that transport could not be arranged for her to travel that far to different homes on different days. We have collected brochures to show her and are hoping this will be some sort of compromise.
She also wanted to visit her old flat for a week, to decide which furniture she wanted to bring. Again, time constrictions and her health needs meant that this wasn't possible. As well as the mobility problems, diabetes, and suspected dementia, she is doubly incontinent and needs someone to change her pads at various times of the day and night. The care staff at the flat only come in up to 4 times a day and do not make night calls. They also do not do very personal care such as this. As a compromise, I took pictures of all the furniture she'd be able to choose from to take to her new home. Together, we decided what would be practical as well as nice and homely.
Because of certain decisions that have had to be made for her, my Nan believes that we are deciding things without her input and basically trying to control her life. This has made her very distressed, angry, and upset at times, alongside other signs and symptoms of Dementia. We have been doing our best to compromise, involve her where possible, comfort her, and do things to make her happy, but it has been extremely difficult.
We were contacted by the bed management person earlier today, to say that health authority funding for the temporary nursing home placement, will end in a week's time, so it would be best to move her into a permanent placement around the same time. This is of course quite a rush, and at the moment, we are shortlisting the homes we like best, and contacting our favourites to see if a room will be available next week. I will probably blog further, once Nan is in a permanent home, to tell you (my readers) how she is settling in.
My Cousin
Things have improved quite vastly with my cousin. Her general health is much better, but she is still unable to move her legs. She has been working with physios, swimming every day (she is a very strong swimmer) and is now having further tests in London, to establish what exactly happened and what the situation is now. To say this is a relief is an understatement. I know she may be reading this so I don't want to go into too much detail, but long story short, it's looking promising.
Mental Health
My mental health has been up and down, to be honest. I've felt the weight of the world on my shoulders, I've been having some very low days, some very emotional days with bad mood swings, some very anxious/panicky days, and today I've had a very agitated and hyper day. I don't have hypomanic episodes strongly/frequently enough for a Bipolar diagnosis, so I think these episodes are part of the BPD mood swings. I'm still waiting on counselling and desperately needing to talk to someone face to face. I think if things get too bad, I'll call out of hours team. I've spoken on the phone to them before and they were very helpful and kind. I've not had to take Diazepam more than a couple of times in the space of a couple of months, so luckily I still have some left. My GP is very very reluctant to prescribe even a small amount because of risk of addiction and/or overdose.
Physical Health
Tomorrow, I will be having an appointment with a Cardiologist. This is because I have been very dizzy and having near-fainting spells for many years. I can only recall properly fainting once, 5 years ago, but I mentioned this to the GP before referral, just in case it was relevant. These dizzy and faintness spells are at their worst and usually are triggered by standing up or sitting up for a while. I find overheating, eating carbs, not having enough fluids, or being stressed make my symptoms worse. I find lying down, eating salty food, and hydrating all help, even if just slightly. I will speak about all of this in much more detail in my next post, as well as documenting how my Cardiology appointment went.
Nan
To recap, my Nan was in hospital after breaking her right Femur. She spent quite a bit of time in hospital after an operation to pin and plate her leg. She was then placed in a nursing home temporarily (quite far away from her home) to rehabilitate. The physios' aim was to get her to a point where she could mobilise enough to cope back at her Assisted Living flat. Unfortunately the nursing staff (physios, carers, nurses) came to realise that Nan had significant physical needs and was on the cusp of Dementia. She simply had too many needs for a general care package in her old flat. She would need to go into a care home.
Since then, social services have been involved and after a couple of assessments (with a cognitive assessment to be done this Friday), they have decided she needs to be in a Residential home with Dementia specialism. My parents, some of my uncles, and I have arranged to see a number of homes, to see what would be suitable.
My nan wants somewhere with semi rural views, a decent sized room (that she could put a recliner chair in), and a variety of meal choices that are freshly cooked. She did also want to view the homes before deciding which she would like to live in. Unfortunately, time constrictions mean that transport could not be arranged for her to travel that far to different homes on different days. We have collected brochures to show her and are hoping this will be some sort of compromise.
She also wanted to visit her old flat for a week, to decide which furniture she wanted to bring. Again, time constrictions and her health needs meant that this wasn't possible. As well as the mobility problems, diabetes, and suspected dementia, she is doubly incontinent and needs someone to change her pads at various times of the day and night. The care staff at the flat only come in up to 4 times a day and do not make night calls. They also do not do very personal care such as this. As a compromise, I took pictures of all the furniture she'd be able to choose from to take to her new home. Together, we decided what would be practical as well as nice and homely.
Because of certain decisions that have had to be made for her, my Nan believes that we are deciding things without her input and basically trying to control her life. This has made her very distressed, angry, and upset at times, alongside other signs and symptoms of Dementia. We have been doing our best to compromise, involve her where possible, comfort her, and do things to make her happy, but it has been extremely difficult.
We were contacted by the bed management person earlier today, to say that health authority funding for the temporary nursing home placement, will end in a week's time, so it would be best to move her into a permanent placement around the same time. This is of course quite a rush, and at the moment, we are shortlisting the homes we like best, and contacting our favourites to see if a room will be available next week. I will probably blog further, once Nan is in a permanent home, to tell you (my readers) how she is settling in.
My Cousin
Things have improved quite vastly with my cousin. Her general health is much better, but she is still unable to move her legs. She has been working with physios, swimming every day (she is a very strong swimmer) and is now having further tests in London, to establish what exactly happened and what the situation is now. To say this is a relief is an understatement. I know she may be reading this so I don't want to go into too much detail, but long story short, it's looking promising.
Mental Health
My mental health has been up and down, to be honest. I've felt the weight of the world on my shoulders, I've been having some very low days, some very emotional days with bad mood swings, some very anxious/panicky days, and today I've had a very agitated and hyper day. I don't have hypomanic episodes strongly/frequently enough for a Bipolar diagnosis, so I think these episodes are part of the BPD mood swings. I'm still waiting on counselling and desperately needing to talk to someone face to face. I think if things get too bad, I'll call out of hours team. I've spoken on the phone to them before and they were very helpful and kind. I've not had to take Diazepam more than a couple of times in the space of a couple of months, so luckily I still have some left. My GP is very very reluctant to prescribe even a small amount because of risk of addiction and/or overdose.
Physical Health
Tomorrow, I will be having an appointment with a Cardiologist. This is because I have been very dizzy and having near-fainting spells for many years. I can only recall properly fainting once, 5 years ago, but I mentioned this to the GP before referral, just in case it was relevant. These dizzy and faintness spells are at their worst and usually are triggered by standing up or sitting up for a while. I find overheating, eating carbs, not having enough fluids, or being stressed make my symptoms worse. I find lying down, eating salty food, and hydrating all help, even if just slightly. I will speak about all of this in much more detail in my next post, as well as documenting how my Cardiology appointment went.
Wednesday, 13 March 2019
Chronic Illness and Hair Loss
[Image Description: Photo 1: A picture of Amy with straight orange shoulder length hair
Photo 2: A picture of the back of Amy's straight orange shoulder length hair
Photo 3: A picture of the bald patch on the back of Amy's straight orange shoulder length hair]
For around 5 years, on and off, I have experienced patches of Alopecia Areata, aka hair loss.
Blood tests have shown different results, B12 deficiency, vitamin D deficiency, Folate deficiency etc but even when my levels have gone back to normal (with the help of a course of tablets) I have still had the hair loss. The only thing doctors seem to have put it down to is stress.
Things have been particularly stressful recently (see my latest two posts) but I do try to take time to relax as much as I can.
It's only since I've had chronic illnesses that I have experienced hair loss, so I wonder whether this is connected. My immune system must be compromised and most of the illnesses I have are systemic; with symptoms affecting various parts of my body.
I'm quite vain about my hair. I enjoy getting it styled and coloured with bright dyes, but I also look after it well; washing every 2 or 3 days with shampoo and conditioner (the kinds that keep it very moisturised, but also keep the colour in), moisturising spray before using a detangling brush, then heat spray before styling. I make sure I have days where I let my hair dry naturally, without a hairdryer.
The first time I had Alopecia, the patch was small but right on the top of my head, so I had to style my hair a certain way to hide it. I felt mortified when someone noticed the patch! I struggle with my own identity (thanks, BPD), but I see my hair as part of it, so to lose it would be like losing a part of my identity! Since then, it has been happening on and off, every few months to a year.
As for treatment, most things don't do much but I've found that a prescribed product called Dermovate at least speeds up the hair growth. I won't say it'll definitely work for you, but if you experience patchy Alopecia, I recommend going to the doctor, having whatever blood tests they send you for, and asking if you could try Dermovate. It is a steroid treatment, and thins the skin so can only be used for a couple of weeks at a time, but compared to waiting for hair to grow back without treatment, this product has definitely sped up the hair growth for me. If you do try it, I hope so much that it works for you too.
Do you experience/ Have you experienced patchy hair loss (aka Alopecia Areata)? Have you found out the cause? Are there any other treatments you would recommend? Please comment below!
References
What is Alopecia Areata and How do I Treat it?: https://www.healthline.com/health/alopecia-areata
Vitamin B12 or folate deficiency Anemia: https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/
Vitamin D deficiency: https://www.webmd.com/diet/guide/vitamin-d-deficiency#1
What is Folic Acid deficiency Anemia?: https://www.webmd.com/a-to-z-guides/folic-acid-deficiency-anemia
Dermovate Ointment: https://www.medicines.org.uk/emc/product/940/smpc
Sunday, 10 March 2019
Updates, and some worrying family news
Since my last post quite a few things have happened.
Nan
My nan has now been temporarily placed in a nursing home. It's further away from family than she'd like but she at least accepted this was the best place for her, at least while she's rehabilitating. Her family (including my dad and I) are taking turns visiting her, so she only has 2 or 3 days where she doesn't see anyone other than the nursing home staff.
Her suspected Dementia is definitely getting worse and she is now doubly incontinent. As for her mobility, on a good day she can stand with the help of a machine (a Rotunda I think?) but she generally needs hoists to get her out of bed and into a chair.
Her nursing home placement was originally only supposed to be 4 weeks, with the hopes that she would be rehabilitated well enough to go back to her assisted living flat. Staff were under the impression (due to Nan convincing them) that she would receive round the clock care in her flat, and carers would tend to her every need. After speaking to some of the family, however, they now know that this is not the case. Once the 4 weeks have passed, Nan will have a thorough assessment of her physical needs, mental health and capacity. Hopefully Dad and I will be able to attend for any other information needed.
To say she is settled in this home would be quite an overstatement. Staff have told us that she is complaining about everything and accusing them of taking much longer to see to her than they actually are. We spoke to one of the nurses based in the home, who has got to know Nan fairly well, and she definitely agrees she has Dementia. She assured us they will assess her for this at the end of the placement, and along with any other concerns raised, we will discuss where she will go next.
Last time I saw Nan, she seemed to accept that she now has too many needs for her assisted living home. She reluctantly accepts she has to stay in this nursing home for now but she wants to go into one much nearer the family when she comes to the end of her placement here.
I feel so conflicted about Nan to be honest. She really annoys me, and I get embarrassed about the way she speaks to staff, but I have to remember that a lot of her behaviour etc is down to the Dementia and for the most part, she can't really help it. I love her to bits though and worry about her constantly. The main things I want are for her to be happy and safe. She's safe at least, but I wish something could help her feel happy. My family and I do our best to ensure her room is as homely as possible but it's impossible to get it just right, and unless it is exactly the same as her old flat, she isn't happy.
Cousin
A few weeks ago, one of my cousins went to the Philippines to do work experience for her medical degree. She'd had all the vaccinations needed, but unfortunately a mosquito bite infected her with Dengue Fever . She was very poorly already and was unable to tell the hospital staff of any other things that had happened.
A few days after she was admitted into the hospital, she became critically ill, and doctors discovered multiple jellyfish stings on her body. She'd been swimming in the sea, and luckily was wearing a bathing suit instead of a bikini, so some of the stings didn't quite get through her skin. Regardless, she is now in intensive care and has been intubated. This is because the neuro-toxins from the jellyfish stings are severely affecting her ability to breathe. She is also experiencing paralysis in her legs.
There have been points where doctors have been unsure as to whether she will survive. Apparently the stings had been in her for a week before being discovered, and the Dengue Fever masked the symptoms of the stings.
We are all so so worried about her, but glad that friends of her parents are keeping us updated about her condition. My aunt and uncle are flying over to the Philippines, so hopefully there will be more updates soon.
My Mental Health (TW: Self Harm)
This year, I planned to do everything I could to improve my mental health. I was so fed up of feeling so stressed, anxious, agitated, demotivated, and low. I was also really frustrated about how easily triggered I am by any mention or discussion of abortion. It's been 10 years since I had my traumatic one and I've never really faced it. I still have a few weeks left on the waiting list for counselling with the Primary Care team, but I feel like I need to start therapy or at least talk to someone ASAP. Once my counselling for this has finished, I plan to get in touch with Women's Aid, about the abusive relationship I was in when at university.
At the moment, I feel like I cannot concentrate on much at all, let alone myself. I am going through the motions, trying to keep as busy as possible, but suffering physically because of it. My head is full of thoughts again, and to be honest I am self harming every day again. I feel quite sore because of it, but I get such urges to do it, I can't resist. When I'm not doing it, I'm thinking about it and it feels like the only thing I can control right now.
As well as this, I can't stop thinking about my Nan and cousin. Is Nan having a good day or bad day? Have the nursing home staff been tending to her needs quickly? How is Nan treating them? What happens if she becomes too verbally aggressive? Will she be assessed properly? Will Dad and I be able to attend the assessment so the social worker etc can get our experiences and views of her behaviour? These are just some of the worries I have about Nan. As for my cousin, my main terrifying thoughts are whether she is still alive, whether she is unconscious because she's so poorly, or because the doctor has put her under anaesthetic. My cousin and I aren't very close, but I still love her and the thought of losing her is too much to bear.
My Physical Health
As I said above, I am trying to keep busy to distract myself from my thoughts, but this is affecting my physical health. I am very dizzy and feeling faint, and having times where I almost fall over or faint.
Alongside this, I've been having some nausea, worse aches and pains, very bad joint stiffness, and I'm extremely tired and wobbly on my feet. I'm not sure how I'd cope outside without my walking stick. I have my ENT follow up next month, where I will be undergoing Vestibular tests . I also have an appointment with a Cardiologist next month, where I intend to ask about being assessed for POTS . I really hope both specialists will thoroughly assess me and be able to come up with a diagnosis on that day. I will make notes, as usual, of my symptoms, what makes them worse/better, when symptoms arise etc. In the meantime, all I can do is make sure I sit whenever possible, and lie down when I need to (which seems to be most of the day!)
So this is what's been happening with me recently! I will write another post when I know more, and my main posts will be about my appointments next month.
Have any of my readers experienced Vestibular tests? I would love to know what happens and if you get a diagnosis on that day. Also with Cardiology, do they do any tests (as well as an ECG) to thoroughly assess your symptoms?
If you can advise, that'd be great! In the meantime, take care everyone, and thank you so much for reading xxx
Nan
My nan has now been temporarily placed in a nursing home. It's further away from family than she'd like but she at least accepted this was the best place for her, at least while she's rehabilitating. Her family (including my dad and I) are taking turns visiting her, so she only has 2 or 3 days where she doesn't see anyone other than the nursing home staff.
Her suspected Dementia is definitely getting worse and she is now doubly incontinent. As for her mobility, on a good day she can stand with the help of a machine (a Rotunda I think?) but she generally needs hoists to get her out of bed and into a chair.
Her nursing home placement was originally only supposed to be 4 weeks, with the hopes that she would be rehabilitated well enough to go back to her assisted living flat. Staff were under the impression (due to Nan convincing them) that she would receive round the clock care in her flat, and carers would tend to her every need. After speaking to some of the family, however, they now know that this is not the case. Once the 4 weeks have passed, Nan will have a thorough assessment of her physical needs, mental health and capacity. Hopefully Dad and I will be able to attend for any other information needed.
To say she is settled in this home would be quite an overstatement. Staff have told us that she is complaining about everything and accusing them of taking much longer to see to her than they actually are. We spoke to one of the nurses based in the home, who has got to know Nan fairly well, and she definitely agrees she has Dementia. She assured us they will assess her for this at the end of the placement, and along with any other concerns raised, we will discuss where she will go next.
Last time I saw Nan, she seemed to accept that she now has too many needs for her assisted living home. She reluctantly accepts she has to stay in this nursing home for now but she wants to go into one much nearer the family when she comes to the end of her placement here.
I feel so conflicted about Nan to be honest. She really annoys me, and I get embarrassed about the way she speaks to staff, but I have to remember that a lot of her behaviour etc is down to the Dementia and for the most part, she can't really help it. I love her to bits though and worry about her constantly. The main things I want are for her to be happy and safe. She's safe at least, but I wish something could help her feel happy. My family and I do our best to ensure her room is as homely as possible but it's impossible to get it just right, and unless it is exactly the same as her old flat, she isn't happy.
Cousin
A few weeks ago, one of my cousins went to the Philippines to do work experience for her medical degree. She'd had all the vaccinations needed, but unfortunately a mosquito bite infected her with Dengue Fever . She was very poorly already and was unable to tell the hospital staff of any other things that had happened.
A few days after she was admitted into the hospital, she became critically ill, and doctors discovered multiple jellyfish stings on her body. She'd been swimming in the sea, and luckily was wearing a bathing suit instead of a bikini, so some of the stings didn't quite get through her skin. Regardless, she is now in intensive care and has been intubated. This is because the neuro-toxins from the jellyfish stings are severely affecting her ability to breathe. She is also experiencing paralysis in her legs.
There have been points where doctors have been unsure as to whether she will survive. Apparently the stings had been in her for a week before being discovered, and the Dengue Fever masked the symptoms of the stings.
We are all so so worried about her, but glad that friends of her parents are keeping us updated about her condition. My aunt and uncle are flying over to the Philippines, so hopefully there will be more updates soon.
My Mental Health (TW: Self Harm)
This year, I planned to do everything I could to improve my mental health. I was so fed up of feeling so stressed, anxious, agitated, demotivated, and low. I was also really frustrated about how easily triggered I am by any mention or discussion of abortion. It's been 10 years since I had my traumatic one and I've never really faced it. I still have a few weeks left on the waiting list for counselling with the Primary Care team, but I feel like I need to start therapy or at least talk to someone ASAP. Once my counselling for this has finished, I plan to get in touch with Women's Aid, about the abusive relationship I was in when at university.
At the moment, I feel like I cannot concentrate on much at all, let alone myself. I am going through the motions, trying to keep as busy as possible, but suffering physically because of it. My head is full of thoughts again, and to be honest I am self harming every day again. I feel quite sore because of it, but I get such urges to do it, I can't resist. When I'm not doing it, I'm thinking about it and it feels like the only thing I can control right now.
As well as this, I can't stop thinking about my Nan and cousin. Is Nan having a good day or bad day? Have the nursing home staff been tending to her needs quickly? How is Nan treating them? What happens if she becomes too verbally aggressive? Will she be assessed properly? Will Dad and I be able to attend the assessment so the social worker etc can get our experiences and views of her behaviour? These are just some of the worries I have about Nan. As for my cousin, my main terrifying thoughts are whether she is still alive, whether she is unconscious because she's so poorly, or because the doctor has put her under anaesthetic. My cousin and I aren't very close, but I still love her and the thought of losing her is too much to bear.
My Physical Health
As I said above, I am trying to keep busy to distract myself from my thoughts, but this is affecting my physical health. I am very dizzy and feeling faint, and having times where I almost fall over or faint.
Alongside this, I've been having some nausea, worse aches and pains, very bad joint stiffness, and I'm extremely tired and wobbly on my feet. I'm not sure how I'd cope outside without my walking stick. I have my ENT follow up next month, where I will be undergoing Vestibular tests . I also have an appointment with a Cardiologist next month, where I intend to ask about being assessed for POTS . I really hope both specialists will thoroughly assess me and be able to come up with a diagnosis on that day. I will make notes, as usual, of my symptoms, what makes them worse/better, when symptoms arise etc. In the meantime, all I can do is make sure I sit whenever possible, and lie down when I need to (which seems to be most of the day!)
So this is what's been happening with me recently! I will write another post when I know more, and my main posts will be about my appointments next month.
Have any of my readers experienced Vestibular tests? I would love to know what happens and if you get a diagnosis on that day. Also with Cardiology, do they do any tests (as well as an ECG) to thoroughly assess your symptoms?
If you can advise, that'd be great! In the meantime, take care everyone, and thank you so much for reading xxx
Saturday, 9 February 2019
Facing my Past
(TW: Meds, mention of Abortion, Overdose, Suicide, and Self Harm. Weight/Diet talk)
After being discharged from CMHT, I've been struggling a lot with my mental health, and not knowing where to turn. A meds review with my GP resulted in a small prescription of Diazepam (so far, I've only had to take 5mg) and, knowing I have this to keep me safe, has prevented me from taking overdoses in order to knock myself out.
On one of my "good" days, I made a decision to put myself first and do everything I can to look after my mental health. I simply cannot afford to abandon my mental health and end up in crisis without support. I'd been putting off contacting Women's Aid (re: abusive relationship) and Cruse Bereavement (re: traumatic abortion) and I needed to decide who I'd contact first and when.
As it had been on my mind recently, and I was getting more and more triggered by any mention or conversation about abortion, I decided to contact Cruse Bereavement first. I tried the national number, then the number for my local area, but couldn't get through. I found some email addresses though, so sent a long email to each of the ones that seemed most relevant to my enquiries.
After a couple of days, one of the email accounts messaged me back. They were sympathetic to my situation and felt an abortion clinic that offers counselling would be most appropriate. This was Marie Stopes. I contacted Marie Stopes and received an email back. Again, they were sympathetic to my situation, and wanted to help, but it would cost. I simply cannot afford to pay for counselling, so I had to decline. I decided to see if there were any other abortion charities in/near my area, but everything I found expected you to pay at least £30 for an hour's counselling. I can't afford to pay that much on a weekly basis. It felt like every time I tried to access help, a door was slammed in my face.
Eventually, I ran out of options apart from one; Primary Care. I didn't want to go through CBT again but I figured any therapy is better than none. I left a message on their voicemail to call me back and the next day, they'd called me back, taken my details, and arranged a telephone appointment for Thursday to see what they could offer me (if anything). I had my telephone appointment on the Thursday and was faced with many many questions (not just about the abortion). After going through the PHQ (questionnaire for Depression), the GAD (for Generalised Anxiety), specific phobias, and daily functioning questionnaires, they asked about my main problems now. They also asked about my lifestyle, traumas in the past, symptoms of PTSD, OCD etc.
Finally, the therapist asked what my reasons were for getting therapy from them, whether I was ready and committed, and why I wanted to tackle these main problems at this point in time specifically. I couldn't give a very detailed answer to this, it's just that I feel that I am so fed up of the way I'm feeling and how much it holds me back. I also feel that I am ready right now and I want to see how I go. I need to face my past and at least try to move on. For that, I need support.
The therapist said she would speak to her supervisor, then get back to me. Later on that day, I received a call from her, with good news. I was accepted and would be put on an 8-10 week waiting list. The wait is a little while, but at least I'm going to get help!
In other news:
I chased up my Cardiology appointment, and after sorting out a problem because my GP hadn't attached the referral letter to the right system, my referral was finally sent. A couple of days later, I received an appointment to see a Cardiologist in April!
So, at the moment I am under an ENT specialist for dizziness (vestibular tests/follow up in April), a Cardiologist for fainting/nearly fainting, and will be seeing a therapist for mental health. I'm really hoping I'll get some answers and maybe even treatment! If something can improve, I will be so pleased!
Family:
My nan is still in hospital, for her broken right femur. She has had an operation to plate and pin her femur into place and is recovering from this. It seems her impacted bowel is still causing her some problems, but she won't discuss this with hospital staff. She also won't tell them about the dizziness she gets when she bends over. Her borderline Dementia is getting much worse, and of course the effects of the anaesthetic are making her confusion worse. She's been having some strange ideas about the hospital, and her money. From what I can gather, she believed that the hospital was being used as a film set, and the other patients were actors. She also believed (and still believes) that her money will disappear, the longer she is in hospital.
When Dad and I last visited her (yesterday), a social care worker came to see her, and was under the impression (due to lack of communication from other staff) that Nan would be discharged either that day or tomorrow. Dad and I had to take the social care worker aside, and explain everything. Because of this, and the fact we'd mentioned the Dementia, she decided to rearrange the appointment. She had also not been told that Nan was eventually going to be transferred to a different hospital, for rehabilitation. It was a good job we were there to explain everything! Nan does just want to go home, and has apparently had her mental capacity assessed (she had passed because it was done on a "good" day) so if she decides she wants to be discharged, she probably will be.
It's a very difficult situation because all the family want what's best for Nan, and we want to keep her safe and comfortable. We want her to have a say in her care as well. Unfortunately, she just wants to go back to struggling along with minimal help, even though she is now at significant risk of further falls, and her Dementia is getting worse. What she really needs, and hospital staff have agreed, is 24 hour care. Nan had managed to convince the social care worker that this is exactly what she will get, but this is not the case at all. She gets a visit in the morning, for washing, putting creams on etc but she will struggle to make very simple meals for herself. The rest of the time, she will stay in her chair, on her own in her flat, and she will even sleep in her chair. She is at a stage where we are considering nursing care. We thought she had at least accepted this, but she doesn't want anything to change. She even said "I don't want anything different, I want it the same".
This is stressing me out a lot and I am letting everything get on top of me. My parents are being wonderful though, and encourage me to take the pressure off myself. For this reason, I have decided to have a break from Slimming World. I had developed an unhealthy mindset about eating and compensating for "bad" days. As well as seeking counselling for certain parts of my mental health problems, I also want to learn more about body positivity. If I can come to a point where I feel better about myself, I can then decide whether to continue with weight loss, or if I just want to maintain my weight. Either way, I will try to keep to a mostly healthy diet, with the odd treat.
So overall, I am working on putting myself first (most of the time) and looking after myself. I need to quieten the thoughts that tell me I'm useless and unimportant. I will blog about my ENT follow up/Vestibular tests, as well as my Cardiology appointment/s and Counselling appointments. For now, I think I'll leave this blog post as it is, and hope that you are all as well as possible!
After being discharged from CMHT, I've been struggling a lot with my mental health, and not knowing where to turn. A meds review with my GP resulted in a small prescription of Diazepam (so far, I've only had to take 5mg) and, knowing I have this to keep me safe, has prevented me from taking overdoses in order to knock myself out.
On one of my "good" days, I made a decision to put myself first and do everything I can to look after my mental health. I simply cannot afford to abandon my mental health and end up in crisis without support. I'd been putting off contacting Women's Aid (re: abusive relationship) and Cruse Bereavement (re: traumatic abortion) and I needed to decide who I'd contact first and when.
As it had been on my mind recently, and I was getting more and more triggered by any mention or conversation about abortion, I decided to contact Cruse Bereavement first. I tried the national number, then the number for my local area, but couldn't get through. I found some email addresses though, so sent a long email to each of the ones that seemed most relevant to my enquiries.
After a couple of days, one of the email accounts messaged me back. They were sympathetic to my situation and felt an abortion clinic that offers counselling would be most appropriate. This was Marie Stopes. I contacted Marie Stopes and received an email back. Again, they were sympathetic to my situation, and wanted to help, but it would cost. I simply cannot afford to pay for counselling, so I had to decline. I decided to see if there were any other abortion charities in/near my area, but everything I found expected you to pay at least £30 for an hour's counselling. I can't afford to pay that much on a weekly basis. It felt like every time I tried to access help, a door was slammed in my face.
Eventually, I ran out of options apart from one; Primary Care. I didn't want to go through CBT again but I figured any therapy is better than none. I left a message on their voicemail to call me back and the next day, they'd called me back, taken my details, and arranged a telephone appointment for Thursday to see what they could offer me (if anything). I had my telephone appointment on the Thursday and was faced with many many questions (not just about the abortion). After going through the PHQ (questionnaire for Depression), the GAD (for Generalised Anxiety), specific phobias, and daily functioning questionnaires, they asked about my main problems now. They also asked about my lifestyle, traumas in the past, symptoms of PTSD, OCD etc.
Finally, the therapist asked what my reasons were for getting therapy from them, whether I was ready and committed, and why I wanted to tackle these main problems at this point in time specifically. I couldn't give a very detailed answer to this, it's just that I feel that I am so fed up of the way I'm feeling and how much it holds me back. I also feel that I am ready right now and I want to see how I go. I need to face my past and at least try to move on. For that, I need support.
The therapist said she would speak to her supervisor, then get back to me. Later on that day, I received a call from her, with good news. I was accepted and would be put on an 8-10 week waiting list. The wait is a little while, but at least I'm going to get help!
In other news:
I chased up my Cardiology appointment, and after sorting out a problem because my GP hadn't attached the referral letter to the right system, my referral was finally sent. A couple of days later, I received an appointment to see a Cardiologist in April!
So, at the moment I am under an ENT specialist for dizziness (vestibular tests/follow up in April), a Cardiologist for fainting/nearly fainting, and will be seeing a therapist for mental health. I'm really hoping I'll get some answers and maybe even treatment! If something can improve, I will be so pleased!
Family:
My nan is still in hospital, for her broken right femur. She has had an operation to plate and pin her femur into place and is recovering from this. It seems her impacted bowel is still causing her some problems, but she won't discuss this with hospital staff. She also won't tell them about the dizziness she gets when she bends over. Her borderline Dementia is getting much worse, and of course the effects of the anaesthetic are making her confusion worse. She's been having some strange ideas about the hospital, and her money. From what I can gather, she believed that the hospital was being used as a film set, and the other patients were actors. She also believed (and still believes) that her money will disappear, the longer she is in hospital.
When Dad and I last visited her (yesterday), a social care worker came to see her, and was under the impression (due to lack of communication from other staff) that Nan would be discharged either that day or tomorrow. Dad and I had to take the social care worker aside, and explain everything. Because of this, and the fact we'd mentioned the Dementia, she decided to rearrange the appointment. She had also not been told that Nan was eventually going to be transferred to a different hospital, for rehabilitation. It was a good job we were there to explain everything! Nan does just want to go home, and has apparently had her mental capacity assessed (she had passed because it was done on a "good" day) so if she decides she wants to be discharged, she probably will be.
It's a very difficult situation because all the family want what's best for Nan, and we want to keep her safe and comfortable. We want her to have a say in her care as well. Unfortunately, she just wants to go back to struggling along with minimal help, even though she is now at significant risk of further falls, and her Dementia is getting worse. What she really needs, and hospital staff have agreed, is 24 hour care. Nan had managed to convince the social care worker that this is exactly what she will get, but this is not the case at all. She gets a visit in the morning, for washing, putting creams on etc but she will struggle to make very simple meals for herself. The rest of the time, she will stay in her chair, on her own in her flat, and she will even sleep in her chair. She is at a stage where we are considering nursing care. We thought she had at least accepted this, but she doesn't want anything to change. She even said "I don't want anything different, I want it the same".
This is stressing me out a lot and I am letting everything get on top of me. My parents are being wonderful though, and encourage me to take the pressure off myself. For this reason, I have decided to have a break from Slimming World. I had developed an unhealthy mindset about eating and compensating for "bad" days. As well as seeking counselling for certain parts of my mental health problems, I also want to learn more about body positivity. If I can come to a point where I feel better about myself, I can then decide whether to continue with weight loss, or if I just want to maintain my weight. Either way, I will try to keep to a mostly healthy diet, with the odd treat.
So overall, I am working on putting myself first (most of the time) and looking after myself. I need to quieten the thoughts that tell me I'm useless and unimportant. I will blog about my ENT follow up/Vestibular tests, as well as my Cardiology appointment/s and Counselling appointments. For now, I think I'll leave this blog post as it is, and hope that you are all as well as possible!
Wednesday, 30 January 2019
Stress Stress Stress
So much has happened recently and it's got my mind in overdrive.
Firstly, mum had a fall and couldn't stand up for hours. Doctor at A&E was useless, but luckily after a stop overnight, she gained enough strength back in her legs to stand and walk a few steps, with help. She is still very wobbly and one of us needs to be in the house with her most of the time, as she is at risk of falling again.
Secondly, I received an ESA limited capability for work questionnaire. I am to be reassessed. It came as a shock, because I thought those with long term conditions would be exempt from these. It seems not, and I'm hearing of quite a few friends in the same situation.
Thirdly, nan had an impacted bowel, and was suffering severe lower stomach pains and nausea. She was taken to hospital by ambulance and received some treatment before being released at 3am.
Fourthly, nan was taken to hospital the next night, following a fall which resulted in a large complex fracture of her right femur. She has since had to have an operation and is recovering.
On top of this, I'm due to have a smear test, I need to book a dental appointment (about 6 months after a reminder letter, oops!) I need to chase up my Cardiology referral, and I need to ring the bereavement charity and/or Women's aid about the abusive relationship I was in.
It feels as if there is so much to think about or deal with, that all I want to do is run away and hide! I have no choice though, I have to get these things done at some point, and I can't get away from the other things I need to consider.
Needless to say, I am EXHAUSTED. Mentally, physically, emotionally, you name it. My Fibromyalgia has been playing up too, as well as the intrusive thoughts and routines with my OCD. I feel on the edge of breaking down, if I'm totally honest.
I was walking down the corridor in the hospital with Dad earlier, after seeing Nan. I was trying to keep up with Dad (he wasn't being fast, it was me being slow) and I got very breathless, my heart was pounding, I was dizzy and felt as if I was going to faint. Going to the toilet only gave me a few minutes break before I had to carry on walking. I've somehow found energy to write this post, but only just.
It seems to be a difficult year for many people, especially those with chronic illnesses (physical and mental). I think all we can do is try to break down the things we need to consider, and prioritise which need doing first. It is so important to look after yourself and be kind to yourself, and I guess this is something I feel I need to do as soon as possible.
Firstly, mum had a fall and couldn't stand up for hours. Doctor at A&E was useless, but luckily after a stop overnight, she gained enough strength back in her legs to stand and walk a few steps, with help. She is still very wobbly and one of us needs to be in the house with her most of the time, as she is at risk of falling again.
Secondly, I received an ESA limited capability for work questionnaire. I am to be reassessed. It came as a shock, because I thought those with long term conditions would be exempt from these. It seems not, and I'm hearing of quite a few friends in the same situation.
Thirdly, nan had an impacted bowel, and was suffering severe lower stomach pains and nausea. She was taken to hospital by ambulance and received some treatment before being released at 3am.
Fourthly, nan was taken to hospital the next night, following a fall which resulted in a large complex fracture of her right femur. She has since had to have an operation and is recovering.
On top of this, I'm due to have a smear test, I need to book a dental appointment (about 6 months after a reminder letter, oops!) I need to chase up my Cardiology referral, and I need to ring the bereavement charity and/or Women's aid about the abusive relationship I was in.
It feels as if there is so much to think about or deal with, that all I want to do is run away and hide! I have no choice though, I have to get these things done at some point, and I can't get away from the other things I need to consider.
Needless to say, I am EXHAUSTED. Mentally, physically, emotionally, you name it. My Fibromyalgia has been playing up too, as well as the intrusive thoughts and routines with my OCD. I feel on the edge of breaking down, if I'm totally honest.
I was walking down the corridor in the hospital with Dad earlier, after seeing Nan. I was trying to keep up with Dad (he wasn't being fast, it was me being slow) and I got very breathless, my heart was pounding, I was dizzy and felt as if I was going to faint. Going to the toilet only gave me a few minutes break before I had to carry on walking. I've somehow found energy to write this post, but only just.
It seems to be a difficult year for many people, especially those with chronic illnesses (physical and mental). I think all we can do is try to break down the things we need to consider, and prioritise which need doing first. It is so important to look after yourself and be kind to yourself, and I guess this is something I feel I need to do as soon as possible.
Tuesday, 15 January 2019
A Blackout, A Fall, GP ENT Follow Up and a Gold Star for Amy!
I've had some eventful times recently, with my health!
Firstly, I had a sort of Blackout about a week ago. My dizziness and faintness have been quite bad and about a week ago I was standing by my bookcase, fussing Billie, and suddenly had a very temporary loss of consciousness. I caught myself in time before I fell, but I have been feeling very weird since.
I've been a lot clumsier since this "blackout"; knocking drinks over, bumping into things/people, and tripping up a lot. This came to a head when I had a bad fall 3 days ago. I was sitting on my armchair, and had to get up for something. I was wearing my pyjamas at the time. I rose from the chair and stepped forward, only to get my right foot caught in my left pyjama bottom leg. I fell forward, turning my left foot right over and spraining it, then fell into the bookcase and back against the wooden part of the armchair. My back is scratched and bruised, my foot/ankle are bruised, and my ankle is sprained. I don't do things in halves!
I decided to document these things, as I had a GP appointment yesterday; to discuss my first ENT appointment. This was with a GP I hadn't seen before, so I was quite nervous, though keen to let her know what had happened.
Unfortunately, the surgery was very busy when I arrived, and I think this was why the GP acted the way she did. She rushed me and, I felt, was dismissive of my symptoms. She quickly went through the ENT letter; where it mentioned the dizziness and faintness and the fact that they wanted me to change from Stemetil (Prochlorperazine) to Cyclizine (both anti-sickness medication), because they felt the Stemetil was making my dizziness worse.
I took my chance to tell her about the blackout. She felt it wasn't a proper one as I hadn't actually collapsed to the floor and she wanted to know if I had fainted recently. I said not recently, but I had fainted once, five years ago. I wasn't sure if it was related, but I thought I'd mention it just in case.
I also mentioned the fall, and showed her my foot. She didn't seem that bothered about it but she did examine it (slightly) and told me it was probably a sprain, but as it wasn't swollen, she wasn't concerned.
She next said to me (I'm paraphrasing here) "Well your blood tests and ECG were normal. Do you think the dizziness and faintness are stress related?"
This was quite an annoying thing for her to say. I know certain symptoms can be stress related, but I know that mine aren't. I have had stressors recently, but they haven't coincided with the dizziness and faintness. I experienced them months before anything particularly stressful happened.
She wasn't going to refer me to the Cardiologist either, but I stood my ground and said that the other GP was going to refer me so I would prefer this. Thankfully, she listened to me, and made the referral. She typed a lot, and I think mentioned the fainting five years ago, the almost-blackout, and the fall, in the referral request.
Lastly, she handed me my Cyclizine prescription, and said that the Cardiology appointment would get in touch with me.
Overall, the appointment wasn't a bad one, because I got what I needed (primarily, the referral). I do wish she'd rushed me less and not been dismissive though. Maybe it was a bad day for her, I won't take it personally.
I awarded myself an invisible Gold Star for holding my ground and asking for what I needed though. Past me would not have had the courage.
Firstly, I had a sort of Blackout about a week ago. My dizziness and faintness have been quite bad and about a week ago I was standing by my bookcase, fussing Billie, and suddenly had a very temporary loss of consciousness. I caught myself in time before I fell, but I have been feeling very weird since.
I've been a lot clumsier since this "blackout"; knocking drinks over, bumping into things/people, and tripping up a lot. This came to a head when I had a bad fall 3 days ago. I was sitting on my armchair, and had to get up for something. I was wearing my pyjamas at the time. I rose from the chair and stepped forward, only to get my right foot caught in my left pyjama bottom leg. I fell forward, turning my left foot right over and spraining it, then fell into the bookcase and back against the wooden part of the armchair. My back is scratched and bruised, my foot/ankle are bruised, and my ankle is sprained. I don't do things in halves!
I decided to document these things, as I had a GP appointment yesterday; to discuss my first ENT appointment. This was with a GP I hadn't seen before, so I was quite nervous, though keen to let her know what had happened.
Unfortunately, the surgery was very busy when I arrived, and I think this was why the GP acted the way she did. She rushed me and, I felt, was dismissive of my symptoms. She quickly went through the ENT letter; where it mentioned the dizziness and faintness and the fact that they wanted me to change from Stemetil (Prochlorperazine) to Cyclizine (both anti-sickness medication), because they felt the Stemetil was making my dizziness worse.
I took my chance to tell her about the blackout. She felt it wasn't a proper one as I hadn't actually collapsed to the floor and she wanted to know if I had fainted recently. I said not recently, but I had fainted once, five years ago. I wasn't sure if it was related, but I thought I'd mention it just in case.
I also mentioned the fall, and showed her my foot. She didn't seem that bothered about it but she did examine it (slightly) and told me it was probably a sprain, but as it wasn't swollen, she wasn't concerned.
She next said to me (I'm paraphrasing here) "Well your blood tests and ECG were normal. Do you think the dizziness and faintness are stress related?"
This was quite an annoying thing for her to say. I know certain symptoms can be stress related, but I know that mine aren't. I have had stressors recently, but they haven't coincided with the dizziness and faintness. I experienced them months before anything particularly stressful happened.
She wasn't going to refer me to the Cardiologist either, but I stood my ground and said that the other GP was going to refer me so I would prefer this. Thankfully, she listened to me, and made the referral. She typed a lot, and I think mentioned the fainting five years ago, the almost-blackout, and the fall, in the referral request.
Lastly, she handed me my Cyclizine prescription, and said that the Cardiology appointment would get in touch with me.
Overall, the appointment wasn't a bad one, because I got what I needed (primarily, the referral). I do wish she'd rushed me less and not been dismissive though. Maybe it was a bad day for her, I won't take it personally.
I awarded myself an invisible Gold Star for holding my ground and asking for what I needed though. Past me would not have had the courage.
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