I need to get a grip

Ames

This is more of a 'get things off my chest' post, because it's all going round and round in my head. So please feel free to ignore!

I'm really struggling with all my health problems. I know there's people on here with far worse, which is why I need to get a grip and pull myself together.

Where to start! I'm under the care of four specialists, and on the waiting list for another.

The main problem I'm having now is with my bowels (I'll white out the details because they're a bit gross). I can count on the fingers of both hands how many solid movements I've had this year. There's lots of undigested food in there, and some 'leakage'. I had my first appointment with gastroenterology a few weeks ago, they've done some tests and I'm waiting for an endoscopy and colonoscopy. I'm worried about the endoscopy because I can't have a sedative. I'm not expecting anything to show up though - my symptoms are classic ones of diverticular disease and gall bladder removal and my GP didn't think I needed to be referred and so refused to make it when rheumatologist asked him to. So my biggest fear is that I'll be sent home to get on with it, because nothing can be done about either of them.

Because of my bowel problems, my GP said I can't take painkillers. I'm under rheumatology but they don't seem to know what to do with me. I had a PET/MRI towards the end of last year which showed no active inflammation. I don't know if that rules out any illnesses completely though. I haven't seen my rheumatologist to discuss the results with her, so I've just got a circular argument going round in my head - I'm in pain. But, I can't be in pain because the scan was clear. I've got big swellings on my joints. But I can't have, because there's no inflammation. So I must be imagining it all. Except, my lab results show a raised CRP so there must be inflammation. But the scan said....

I'm getting the same symptoms in my hip as when I had bursitis a couple of years ago. It was dealt with easily by a steroid injection, but I can't have that again because it sent my diabetes out of control. And as I said, I can't have painkillers. My immunologist asked my GP to refer me to the pain clinic but they said no, that would be stepping on the rheumatologist's toes. I haven't a clue when I'll see them again.

Also in November, I found out that the 'life prolonging' treatment for my immunodeficiency wasn't working. I'm waiting for test results to see if an increased dose and frequency has helped. But I'm struggling with the side effects, especially because of having it more often.

November was a busy month - I also had my mental illness diagnosis changed to Bipolar Type II and Borderline Personality Disorder. I'm really struggling to accept the BPD diagnosis. I also had my meds changed, which has led to a couple of really rough months.

It's all really starting to affect me, and uni have suggested I think about leaving. Going to an average of two medical appointments a week is leaving me drained because they always lead to more worries. Especially since everything seems to clash.

Well done anyone who got this far! Sorry it's so rambly and incoherent.

As I said, I know it's all minor, but they're adding up into something perilously close to unmanageable. And I'm feeling pretty fragile right now.

Obviously I'm not asking for medical advice.

DomRavioli

Hi OP,

I have BPD as well. Don't be afraid of it, its just a series of words that one person puts together. I call mine Dave, it seems to have less of a negative connetation.

I'd advise going on Moodgym (its free online CBT, and its pretty good). Its helped me a lot over the years, it might not help you but unless you try you'll never know. I found it great when I had to have major surgery and I "threw a wobbler" - I couldn't cope.

Are you under the CMHT for your MH issues? If so, ring them. That is exactly what they are there for, use them as much as you need to. If you're on care plan approach (I'm not but some are) then there should be contacts in there as to who to contact to get you feeling more stable.

Just know you aren't alone - its around 1 in 100 or 1% of the population has a PD, we just hide them really well. Most people don't know I have one.

Ames

Thank-you for the very speedy reply!

I'm not 'afraid' of the BPD diagnosis, I just don't recognise myself when I read up on it. There are other PDs that I identify with much more, in particular avoidant. I've asked for a copy of the letter the psychiatrist sent to my GP about my diagnosis, apparantly it was very detailed and should help me to understand their reasoning. The psychiatrist I saw has moved on now though.

I'm sort of under CMHT. I have a CPN but it's just to sort out a care plan, crisis plan etc. I'm seeing her next week. I don't expect to see her more than another two or three times. I've been offered a referral to a psychologist, but the waiting list is a year.

I'll look at moodgym, thanks. I've found basic CBT helpful in the past, the psychiatrist talked about DBT but they've even closed the waiting list because demand is so high.

Hopefully a lot of how I'm feeling is down to my new meds. I've not been on them for two months yet, so might not have kicked in yet. Plus I'm still only on the starter dose. I'm also not sure if my mood stabiliser is being digested, as I'm seeing it in the toilet bowl (sorry, tmi I know). According to google though it's probably just the casing, which is quite common with modified release meds.

teddysmum

If your GP refuses to take your specialist's advice, then do let the latter know about this.

Ames

Thanks, I do let them know when I see them again. Sadly it happens a lot, I can think of at least four occasions.

Lanzarote1938

Could you have painkillers via a sticky patch so they wouldn't have to go through your digestive system?

DomRavioli

Ames wrote: »

Thank-you for the very speedy reply!

I'm not 'afraid' of the BPD diagnosis, I just don't recognise myself when I read up on it. There are other PDs that I identify with much more, in particular avoidant. I've asked for a copy of the letter the psychiatrist sent to my GP about my diagnosis, apparantly it was very detailed and should help me to understand their reasoning. The psychiatrist I saw has moved on now though.

I'm sort of under CMHT. I have a CPN but it's just to sort out a care plan, crisis plan etc. I'm seeing her next week. I don't expect to see her more than another two or three times. I've been offered a referral to a psychologist, but the waiting list is a year.

I'll look at moodgym, thanks. I've found basic CBT helpful in the past, the psychiatrist talked about DBT but they've even closed the waiting list because demand is so high.

Hopefully a lot of how I'm feeling is down to my new meds. I've not been on them for two months yet, so might not have kicked in yet. Plus I'm still only on the starter dose. I'm also not sure if my mood stabiliser is being digested, as I'm seeing it in the toilet bowl (sorry, tmi I know). According to google though it's probably just the casing, which is quite common with modified release meds.

I've only just noticed your username - I was in a band a long time ago called Ames Room. Spooky!

DBT was a waste of time for me, it was weeks of being shouted at (they have to literally knock everything out of you before the treatment can commence and I'm a tough little cookie so there was zero chance of that happening - just came across as angry therapists being angry). I also don't fit the BPD criteria, I never have done, but it gets me higher DLA so if they want to give me that shoe I will lace it up and wear it!

If you have a PD, the CMHT have to look after you - if you go on the NICE website and put in personality disorder pathways, they are your first port of call for everything. Don't let them fob you off.

Ames

Lanzarote1938 wrote: »

Could you have painkillers via a sticky patch so they wouldn't have to go through your digestive system?

No-one's suggested that, although I think it was what the immunologist was getting at when she said I should see the pain clinic because they have more options available to them. As I said though, the GP I saw said no to the referral.

DomRavioli wrote: »

I've only just noticed your username - I was in a band a long time ago called Ames Room. Spooky!

DBT was a waste of time for me, it was weeks of being shouted at (they have to literally knock everything out of you before the treatment can commence and I'm a tough little cookie so there was zero chance of that happening - just came across as angry therapists being angry). I also don't fit the BPD criteria, I never have done, but it gets me higher DLA so if they want to give me that shoe I will lace it up and wear it!

If you have a PD, the CMHT have to look after you - if you go on the NICE website and put in personality disorder pathways, they are your first port of call for everything. Don't let them fob you off.

Wow, I didn't realise that's what DBT is! I thought it was more coming to terms with whatever had happened and how to deal with it better, not that it was effectively a complete reprogramming!

It's been made clear that once all the paperwork is done I'll be referred back to my GP. There is a specialist PD clinic but it's full and not accepting referrals. So I'm not sure if there's any point me being kept on their books when they can't offer me any help. I'll see what the nurse says next week though.

Lanzarote1938

GP can prescibe analgesic patches. There are many types.
Perhaps you should consider changing G.P as your present one does not appear to be meeting your needs.

Ames

Oh, I haven't said the half of it! My current favourite is the letter I got a few weeks ago saying they'd realised I was overdue a particular blood test I'm supposed to have because of medication I'm on. Yep, I'd say five years counts as overdue. Although I guess that's partly my fault - if I'd realised I needed it I would have made sure it was done at my yearly review. I'll know for future. They are good at emergency stuff though.

I'll look into patch analgesics, thank you for the suggestion.

I'm scared to move in case it's out of the frying pan into the fire, though. I did have a look online at other places, but their reviews were pretty dire and often a lot worse than where I am now.

GlasweJen

I know I need to be careful because of the "no medical advice rule" but are you benefitting from all these appointments? I've been there seeing specialists for everything and not getting anywhere.

With me there was a lot of reviews and suggestions but with no cure and no treatment it was a waste of time and left me feeling confused and alone and frustrated there was no cure and angry that the GP wouldn't manage it and feeling that all these specialists were incompetent as they would look at one system and not the rest.

I decided to bin the ones where I was just a formality and felt better as less appointments and less specialists predicting doom. I went to the appointments and asked if there was anything else they could do, anything they could suggest to make life easier and mutually agreed to call it a day with an open discharge so I can get back on their books if I deteriorate.

I binned: neurology (musculoskeletal), neurology (headaches), gastroenterology, cardiology, neuro-ophthalmology, orthoptist, rheumatology, genetics, and renal. Kept transplant, pacemaker and ophthalmology.

I also binned the GP and got an advocate who helped me find a new GP and helped me weed out the rubbish ones in the area by helping me call and speak to the practice manager and ask how experienced the GP was with managing the above, he put me in touch with anxiety UK to arrange counselling (private but fees based on income).

Weirdly it helped, I ended up back under cardiology and might gain headache neurology again as he wrote a plan and it's not really helped and we are near the end of his suggestions.