Chronic Illness, Not coping well.

[feeluseless]

Just over a year ago I was diagnosed with a chronic illness called hidradenitis suppurativa, although I have had it for 7 years, they just did not know what it was so it took so long to diagnose me.

Nothing in my life is the same anymore, everything has changed, the food I eat, the clothes I wear, the things I can no longer do without being in near constant pain, I am not sleeping (lucky if I am falling alseep by 4am each night) I have had and lost six different jobs over the years because I just can't seem to hold one down.

As an example, the last job I had I lasted four days before my Husband told me I wasn't going back, I was bleeding through my clothes and in so much pain, ended up getting an infection and that put me out for almost a month.

We can't survive on my Husband's wage alone, we have a mortgage, he has been paying everything and we never have any money at all, I did apply for DLA (at the time) and was turned down, the only reason they gave me was that I was able to walk unaided. I do not qualify for income support because my Husband works slightly over the hours they allow, I feel lost, I can't keep getting jobs then not being able to cope.

The doctor will not give me any painkillers, he will not give me sleeping tablets, I just feel like I have been left alone to cope with everything and I don't know what to do anymore. I am just sitting at home day after day, even cleaning the house or walking to the local shop five minutes away makes my symptoms come up.

I constantly have dressings and plasters on my body, I wake up with blood everywhere in the mornings, I find it hard to sit down, lay down, walk, I don't even remember what it is like being comfortable anymore.

I do want to work, I hate the way my life has become, I am only in my 30s and I feel like my life is over and will never be the same.

Anyone else out there with this illness? How do you cope with it? What kind of work do you do? How do you cope at work? I found myself in the toilets in my break times cleaning blood from myself and changing my dressings and hoping people wouldn't see any blood or smell the awful smell coming from me.

I feel like going to bed forever and never getting up again, I know I am useless, but I also know I can't be the only person in the world with this condition and I am sure other people just get on with it and cope, I am just not at that stage yet, how do I get there?

You are NOT useless. This is not your fault and I am so sorry that you are struggling with this. Anyone would! It sounds bloody horrible and although I don't have it, I am also struggling with a chronic illness, so understand all the other stuff you are going through.

Not massively helpful, but wanted you to know you're not alone. I'll hold your hand (from my bed) until someone with more energy and information comes along

Hopeful bumpity-bump for the evening crowd

Anyone?

It sounds like you need to see a different GP and probably a different Consultant as well, to get them to review your treatment (or lack of). They can't just leave you in pain and unable to sleep.
I would also recommend the Benefits & Work website for help with benefits. I think the subscription is £20 for guides you can download that take you through step by step how to claim and who is entitled to claim.
Good luck, try not to let people fob you off, they need to help you, it's not ok to just leave you like this.

Another chronic illness sufferer here. Sorry that you are going through this. I think that your priority health wise has to be finding a more understanding doctor. It isn't acceptable that you are being left without pain relief. I was at the GP every other week until mine was managed acceptably and they were fine with that. You could also ask for a referral to a pain clinic. Hopefully sorting out the pain would help your sleep too, but in the short term, I find either Kalms helpful, or a drowsy anti-histamine for something stronger (although check with a pharmacist) that is OK with your medications. For over the counter pain relief, your strongest is co-codamol or paramol, both of which you can combine with ibuprofen.

You sound a bit depressed as well (understandably). A good GP would help manage that, maybe with medication, but perhaps some talking therapy as well I have had CBT before, and am waiting to see a health psychologist, who helps people adjust to chronic illness.

Regarding benefits, it might be worth another look, because you mention DLA and income support, but most areas have moved to PIP and ESA, which are assessed differently. I am not sure about ESA but certainly PIP looks at how your illness affects you. They are not easy benefits to claim, but there is a lot of information on the internet about how to fill in the forms, and often there are local disability or welfare charities who help people fill in the forms.

Finally (sorry for the essay!) I would say that your illness would be classed as a disability in terms of employment rights, so when you get a job (you don't have to mention it at interview stage), your employer must make reasonable adjustments. For you, this might be an extra break to change your dressings, time off for appointments, sitting down to work if you are in pain etc.

OP that sounds really tough.

I'm concerned that you are in pain and say that your Dr won't give you any analgesia. If your pain is chronic and cannot be managed by over the counter pain killers then there should be a discussion about which prescription options might be suitable for you (it may be that you have other conditions that complicate things, I don't know).

Are you under the care of a hospital dermatology team? Perhaps a chat with one of the specialist nurses (can be telephone) might be helpful regarding pain and dressing/wound care in daily life. If they don't have the answer, it's likely that they can signpost you to someone who does. Or perhaps local peer support in your area?

Hi OP I'm so sorry you're going through this.
I would go to see a citizens advice bureau regarding your dla again. It took me three attempts for my dd to get her the dla. You shouldn't have to put up with the added stress of finances when you have so much going on at the moment.

I too have a chronic condition though a different one. What works for me is to try to be as specialist as the specialists. I am extremely knowledgeable about my condition and keep up to date.

More often than not the drs and i have a two way medical discussion of the pro's and cons of a treatment - they know that i know my stuff really well and i am usually as up to date as they are.

I did a quick google and see there is a specialist clinic at Guys snd Thomas's
www.guysandstthomas.nhs.uk/our-services/dermatology/specialties/hidradenitis-suppurativa/Overview.aspx.
You may not be able to get a referral (i would be pushing though) but you can read all the papers the consultants at the clinic have written. Most will do private practice too - where i am an initial 1/2 session with a consultant is £250. You could call the consultants secretary ( who have the true power!) and ask if they know of other clinics. The co- authors of any papers on your condition will also lead you to other specialists too.

I see there is also a charity www.hstrust.org. I would call or email if you've not done so and ask for details of any support groups and if they have list of specialists. Read everything on their website.

There will also undoubtedly be at least one active us based online forum - track it down and join - it is good to have sone where to let of steam where others understand. Treatment may be more progressed there too.

I have done/ do all of this - I feel much more in control and that i am doing the best i can for myself rather than being at the mercy of others.